Camps for Kids are specialized camps that offer unforgettable experiences – from reeling in a fish to conquering the ropes course. They also go beyond traditional fun as they provide opportunities for campers to build supportive, lasting relationships with others who share similar life experiences.

Each weeklong camp and weekend retreat focuses on a different diagnosis or patient population. The goal is to create a sense of normalcy by providing experiences that help campers learn skills and gain independence. Click here to view a list of summer and weekend camps opportunities provided for eligible patients.  

Camp staff and medical staff work together to operate the camps, which creates a safe environment where kids can simply be themselves and share the magic of camp.

Kimberly Henry, a respiratory therapist at Cook Children's, has volunteered at camps for 18 years. 

Henry says these camps are an opportunity for education and learning more about what's necessary for daily care and health. Campers learn and grow alongside other children like themselves.

“I love the time spent with the campers making sure they are having a great time and learning how to take ownership,” Henry said. “To me, it’s rewarding to turn a child’s thoughts from ‘I can’t do that because I have muscular dystrophy or asthma’ to, ‘I can do that and I have muscular dystrophy or asthma.’”

Liz Barriteau, respiratory patient family asthma and trach educator at Cook Children’s, encourages volunteers to get involved with Camps for Kids. She says the most rewarding aspect of volunteering at Camps for Kids is “seeing the children being set free.”

“My advice is that if you like working with children, just do it!” Barriteau said. “It is very rewarding, and it is for a great cause. Camps need counselors, male and female, in order for camps to function well and safely. Without counselors, there is no Camps for Kids.”

If you’d like to volunteer at a camp this summer, please reach out to that camp’s coordinator listed here.

To donate:
Camps for Kids is a donor-funded program ensuring that all campers’ fees are provided. Each camp is targeted to provide memorable experiences to campers with a similar diagnosis. If you’d like to donate and provide these deserving children an experience that will impact them for the rest of their lives, click here.

“Aetna, which is set to win a multibillion Texas Medicaid contract, got a peek at sensitive information submitted by 17 rival health plans during the bidding process after the state Health and Human Services agency erred and sent competitors’ proposals to the health insurance giant too early, according to emails and documents obtained by The Texas Tribune.”

Important Information for CCHP Members:

• Your coverage is still active: Your health insurance with CCHP remains active for at least the next year and a half.
• Keep seeing your current doctors and other providers. Nothing has changed. You can continue seeing all your favorite doctors and specialists both at Cook Children's hospitals and clinics as well as our other network providers, just like always. Absolutely nothing will be different for you.
• If you are a STAR Kids Member, there have been no announced changes to that program.
• Share your experience as a CCHP member or ask questions here: CommunityMarketing@cookchildrens.org.
• Stay informed: Visit cookchildrens.org for updates.

RELATED STORIES

Fort Worth Report: Cook Children’s Health Plan Denied STAR & CHIP Managed Care Services Contract (checkupnewsroom.com)

Texas Tribune: Cook Children’s Health Plan Denied Contract (checkupnewsroom.com)

Cook Children’s employees Ashley Pagenkopf and Danny Peltier were in for a big surprise Tuesday when Kidd’s Kids announced their families are going on an all-expenses-paid trip to Walt Disney World!

Every year, Kidd’s Kids takes 30 to 50 children with life-altering or life-threatening conditions and their families on an all-expenses-paid, five-day trip to the magic kingdom.

Emergency medicine physician Dan Guzman, M.D., who serves as a Kidd’s Kids board member, and Cook Children's team members surprised the two families with the announcement, Disney-themed balloons and pairs of Mickey Mouse ears at the Child Life Zone.

“We’re going to Disney!” said Ashley Pagenkopf, a child life specialist in the Cook Children’s emergency department. “I can’t believe it. None of my kids have ever been and I was 12 years old the last time I went, so it’s really exciting. We wanted to take the girls but we cancelled a trip because it was just too much. None of us expected this!”

In April 2022, Ashley’s middle daughter, Averly, began having seizures and was diagnosed with a glioneuronal tumor. She underwent surgery in August and has been seizure free since. Every three months, Averly visits St. Jude Children’s Research Hospital for follow-ups.

“She’s doing awesome – clearly!” Ashley said. “She’s so crazy strong. Kids are so resilient.”

Ashley said she looks forward to experiencing moments of magic with her girls and other families on the trip.

Danny Peltier, practice manager for Cook Children’s Outpatient Psychiatry, says he also looks forward to building memories with his family at Disney World.

“It’s just something we weren’t able to make happen on our own yet,” he said. "So this is going to be a lot of fun for the family!”

Peltier and his children, Will and Evelyn, have a rare genetic condition called hereditary spastic paraplegia, which presents similarly to cerebral palsy but only affects their lower extremities.

“I’m excited to see their faces once we get through the gates and they can just take it all in,” he said. “It’s going to be a lot of fun!”

Kidd’s Kids is a nonprofit founded by the nationally-syndicated Kidd Kraddick Morning Show based on 106.1 KISS FM in Dallas-Fort Worth. The annual Kidd’s Kids trip is made possible by donations and an army of volunteers, including doctors and nurses who make the trip to help the families. 

“We take a team of physicians, nurses, paramedics, child life specialists and respiratory therapists,” Dr. Guzman said. “We go and serve the kids.”

Dr. Guzman says oftentimes the children and families who go on the trips have been patients at Cook Children's. The medical team’s goal is to make sure that the children enjoy the parks without having to worry about any medical needs. If any issue does arise, the team is there to help the children get through it safely. 

“To be there, to enjoy it, to watch their faces and see that love – ah, it’s amazing - you can’t script that at all!” Dr. Guzman said.
 

The Jane Justin School, under the Child Study Center at Cook Children's, is a private school that provides special education to children. This year, 86 students are enrolled.

Early Monday morning, students hugged their parents, took photos in front of the school and met their teachers. Friends reunited with hugs and talked about their summers.

“The friendships are strong here,” said Tracie Mann, Ph.D., Headmaster at Jane Justin School. “A lot of them do things after school together and get together over the summer. Everybody is really excited for the first day.”

“I'm ready to get back to lessons and play with my friends – and not go outside because it's way too hot," student Wyatt Merchant said. 

Students in the Purple Room class are between 7 to 9 years old. They gathered around to color a large “back to school” sheet together.

“We're such a small community of people and we're so welcoming and so warm,“ Dr. Mann said. “I think it makes it easier for children to come in every year and kind of make that transition.”

According to the latest available data (June 30), Cook Children’s has treated 29 patients for gunshot wounds in 2023. Two of those patients died from their injuries.

Findings from Cook Children’s 2021 Community Health Needs Assessment survey revealed:

• Of households with guns in Cook Children’s eight-county service area, 1 in 5 children live in a home with guns that are not always safely locked away (locking up the firearm and storing ammunition in a separate location).
• Ten percent of young children, 20% of 6–11 year olds and 30% of 12–17 year olds live in a home with a gun that is not always safely locked away.

“As a physician focused on injury prevention, I know local leaders are instrumental in educating children and families about the risks unlocked guns pose in the home,” said Daniel Guzman, M.D., emergency medicine physician and program director of the Aim for Safety program at Cook Children’s. “We’re grateful for the leadership Fort Worth has shown on this important issue.”

Partners in this proclamation included Lock Arms for Life, a Texas-based nonprofit that works every day to get all guns locked when not in use.

Summertime is the best time of year (in my opinion!). Schedules can sometimes be looser, we can be outside more and it’s great to have a break from schoolwork! It is common to be more relaxed with the bedtime routine.

As a parent myself, I am happy to let a strict bedtime for the school year fade away. However, a late bedtime and waking up late can end up being troublesome during this time of year when we know we have to return to a more regular schedule.

It isn’t “bad” for kids to go to bed late and awaken late, as long as they are getting the total number of hours of sleep recommended for their age. I have met a few kids that go to bed late but also wake up early so they are tired in the daytime, which can impact their behavior.

Our middle school kids are programmed to go to bed late and awaken late -- this change to the clock inside your brain is part of the pubertal process. Therefore, it can be hard to fight the return to an early morning wake-up in August.

How should you do it? Here is one method. Once a person has been going to bed late for a longer period of time, the brain becomes accustomed to that. So simply getting in bed early won’t mean that a person gets to sleep early.

It’s best to continue with the late bedtime, but get up a bit earlier (like 1 hour earlier) than usual. It’s hard to do but using sunlight exposure (sun to the face) and encouraging breakfast can help. Then kids will be naturally tired earlier the following evening since they arose earlier that morning. Some parents use melatonin (dose of 1-3 mg) given 1 hour earlier than the late bedtime to help with falling asleep as well.

Watching caffeine intake, aiming for calm play in the hours before bedtime and keeping lighting low can also help with resetting bedtime. Screen use (TV, phones, computer monitors, and video game consoles) should stop around 1 hour before the desired bedtime as well.

Remember that bright artificial light (from screens) can trick your brain into thinking it is daytime. Try not to allow afternoon naps, so kids build up their sleepiness- aiming for a reasonable bedtime.

Sometimes writing down the plan for bedtime/waketime change can help. Kids can be an ally here so involve them in the process.

Good luck with the new school year!

At Cook Children's, taking care of our employees is a top priority because we know that employees can serve our patient families best when they feel healthy, happy and strong. To be acknowledged of our dedication to our employees, specifically for our Healthy Me Wellness Program is outstanding.

Healthy Me is Cook Children’s voluntary employee wellness initiative to create an overall culture of health and wellness for all of our employees. The program offers a range of unique benefits available to all employees, including our onsite 24/7 fitness center called the Wellness Zone, making it convenient to incorporate exercise into everyone’s daily routine. The Wellness Zone is staffed with fitness experts who offer group exercise classes and personalized fitness assessments, enhancing the overall wellness experience. Within the last year, 47% of our employees have participated in 589,222 workouts.

Beyond physical health benefits, the Wellness Zone also plays a crucial role in supporting employees' mental well-being, with yoga classes seven days a week. The Healthy Me program also includes webinars about burnout and stress, financial planning, and healthy eating, and maintains a wellness room where employees can take a break and relax with adult coloring books, journals and other resources.

Cook Children's would not be able to provide amazing services without its employees. Very special thank you to our Healthy Me Wellness Program team for all they do to support all 9,000 employees.

Our Child Life teams utilize in-kind donations every day, all day. From stocking playrooms, celebrating birthdays, offering comfort, providing distraction, and meeting basic needs, donations are the backbone of serving patients and families.

Back in 2005, I began a Community Relations Internship at Cook Children’s alongside Kat Davitt, who at the time was the Community Relations Specialist. One thing has not changed over all these years: the generosity of the community is paramount to serving patients and families at the medical center. During my internship, I got a front-row seat to the vital role that donations play day in and day out. I also got to see the raw joy donations and gifts brought to patients and families. 

Over time, the job titles, employees that handle donations and departments have changed. Currently, Megan Hodges-Cook is our Community Programs Coordinator within the Child Life Department. She serves in one of the most important jobs within our department – she collects, sorts, and distributes all our donations along with coordinating all our special events for patients and families.

Every day in the Emergency Department, I hand out Legos to the kiddo that just made it through a really difficult procedure or I bring a fidget to the kiddo that just needs something to keep their hands busy.

We hand out stuffed animals, playdoh, crayons and Hot Wheels to normalize the environment that otherwise brings anxiety and fear. Donations change the atmosphere and offer peace and joy amid the hardest moments in a family’s life.

“I’ve seen many patients who just feel awful, and the moment they receive a toy or art project, their demeanor changes,” Hodges-Cook said. “They can begin their physical healing because we have attended to their spirit and soul.”

Cook Children’s provides family-centered care, so donations are not only for patients but also for siblings and other family members. We also utilize donations to celebrate birthdays, holidays, milestones, etc. We have full-blown parties and have even hosted a patient’s wedding in our garden!

One of our donors provides birthday celebration items. Her gifts of wrapping paper, gift bags, streamers, etc. probably touch every patient that celebrates a birthday with us.

Hodges-Cook also shared this story about a donor: “We have a family who brings backpacks once a year in honor of their daughter. A year after receiving a backpack, another family mailed the backpack they received filled with similar items and a note describing how the backpack fulfilled their needs and lifted their spirits when they were in crisis. So the legacy of this little girl has started a domino effect of giving.”

 “Hands down the best part of my job is that I am the only person who gets to witness the joy of the giver (because so many people are joyful in giving), the joy of the receiver when I pass out donations to patients and the joy of the staff who get to share donations with patients and families,” Hodges-Cook said.

Needs

We rely on donations year-round and use them throughout the system including outpatient clinics, urgent cares, neighborhood clinics, and within our therapy settings.

Currently, we receive 70% of our annual donations during December. However, because of this, we have gaps in our needs that often need fulfilling throughout the year. Our gaps include needs for specific age groups or high-demand items that go quickly. Infants and adolescents experience the highest gaps in donations.

• About 25% of our daily population is infants. Items like teethers, rattles, and Wubbanubs/pacifiers are one-time-use items and we often don’t have enough. We also need light-up infant toys regularly.
• Adult-sized items in clothing and adult coloring and activity books are always in short supply for our teens and caregivers.
• We have ongoing needs for clothing sized from Infant to Adult XXLG. We utilize many gender-neutral comfort clothing like sweatpants and t-shirts and underwear regularly to meet the needs of patients and families.
• Our high-demand items include coloring supplies, playdoh, decks of playing cards, sensory items (fidgets, kinetic sand, and slime cups), Hot Wheels cars, Lego kits, toiletries and clothing.

Some things to remember and consider before donating to the hospital:

• Due to the immunosuppressed nature of the patients we serve, we cannot accept used items. This includes any items that are in “like new” condition.
• Out of cultural humility to the diverse population we serve, we cannot accept religious items.
• We cannot accept items that are violent or rated anything higher than E for Everyone (video games) or PG (movies).
• Due to privacy and infectious control reasons, donors are unable to pass donations/gifts directly to patients.
• We ask that all donations are unwrapped so we can best match them to patients.

You are able to give online. You can use this special Christmas in July wish list: https://www.amazon.com/registries/gl/guest-view/2W1H6ULYM5O3L

In Fort Worth, you can bring all donations to the Main Entrance of the hospital located at 801 7^th Ave, Fort Worth, Texas 76104 where you will find a donation bin. For any questions or to schedule a time to bring a larger donation, you may email childlifedonations@cookchildrens.org.

To make a donation at Cook Children's Medical Center - Prosper, email childlifeprosper@cookchildrens.org.

You may also donate to the Cook Children's Health Foundation here and designate your gift to Child Life.

Thank you for your generosity as a community! We are humbled to serve patients and families and recognize that we could not do much of our job without the generosity and kindness of our communities. Please consider donating knowing that you are changing the atmosphere of the medical center, and blessing patients and families immensely!

It’s a big milestone for parents of young children to turn their car seats to face forward. Some may wonder, when is the appropriate time to do so? Is it when the child wants to look out the window? Is it when the parent wants to see the child? This milestone should be delayed for as long as possible because safety is the top priority. Keep your child rear-facing to help prevent severe injuries during a crash.

“Keep them rear-facing until they reach the maximum weight and height of the car seat,” said Sharon Evans, trauma injury prevention coordinator at Cook Children’s. “Rear-facing is the safest way they’ll ever travel.”

Car crashes are a leading cause of injury and death in children ages 1 to 13. Every year children are rushed to the emergency room to be treated for car-related injuries.  

Check your car seat’s manual -- the most important piece of information will be determining the maximum weight and height limit of their rear-facing car seat. Most car seats will go to 40 pounds rear-facing so your child could be 3 or 4 years old before you turn them around.

Keeping your child rear-facing also protects their spinal cord in the event of a car crash. When they’re rear-facing during a crash, the impact will cause the car seat to dip, protecting their spine and neck.

“You’re keeping their head, neck and spine all in alignment,” Evans said. “The majority of the crash forces are taken on the back of the car seat and less of the crash forces are not transferred to the child.”

Parents may worry that their child’s feet are touching the vehicle seat when the car seat is rear-facing.

“You would think that there is a chance that they would be more prone to having a broken leg, but what we found through research and the American Academy of Pediatrics says that there is no increased risk,” Evans said.

If a child is facing forward during a crash, that is a lot of force to put on a child’s spine and neck.

“If you have that sudden stop, the pressure and force put on their neck can cause severe spinal cord injuries,” Evans said. “During that stop, their head and their arms are all going to come forward and that force can cause broken arms and legs.”

Check the harness straps are at or just below their shoulders and the retainer clip always needs to be at the armpit level, Evans said. Make sure the straps are snug with the pinch test.

After outgrowing a rear-facing car seat, children will move to a forward-facing car seat until at least age 5 based on the weight and height limit for the car seat.

The next seat is a booster seat, which is used until the seat belt fits properly, usually around ages 9 to 12, according to the Centers for Disease Control & Prevention.

FREE CAR SEAT CHECKS

Parents and caregivers can bring their vehicle and car seat for a free car seat check with the Cook Children’s Center for Community Health at 682-885-2634 or go online to freecarseatcheck.org.

Certified technicians will inspect your car seat free of charge and show you how to correctly install and use it. Some locations now offer virtual inspections.Top of Form

The National Highway Traffic Safety Administration maintains a directory of many inspection stations.

Always refer to your specific car seat manufacturer’s instructions (check height and weight limits) and read the vehicle owner’s manual on how to install the car seat using the seat belt or lower anchors and a tether, if available.

More information & resources:

• Car Seat Safety (for Parents) - Cook Children's (kidshealth.org)
• Register your car seat and sign up for recall notices to receive safety updates
• Car Seat and Booster Seat overview from the NHTSA
• Car seat recommendations from the NHTSA
• Child Passenger Safety | Injury Center | Centers for Disease Control & Prevention
• Child Passenger Safety | Pediatrics | American Academy of Pediatrics (aap.org)

Breathing in secondhand smoke isn’t healthy for children, whether the smoke comes from tobacco or marijuana.

Many of the same toxins and irritants in tobacco smoke are also present in marijuana smoke, according to the American Lung Association. Children who are exposed – at home, in the car or in other places – are indirectly inhaling any particles the smoke contains. No amount of secondhand smoke is safe.

What concerns doctors about secondhand smoke? “It can lead to chronic cough, mucus production and infection,” said Alice Phillips, M.D. at Cook Children’s Pediatrics Cityview. “If the child has asthma, it could trigger an asthma attack.”

It’s an increasingly common experience for Dr. Phillips to smell marijuana when patients and their families come to appointments. She detects the marijuana scent on parents and caregivers, as well as in the clothing of young children.

“In the past, I might have noticed one to two times per month, but now it is multiple times per week or even per day,” she said.

Daniel Guzman, M.D. encounters the marijuana odor on three or four patient families every shift he works in the Cook Children’s Emergency Department (ED). Dr. Guzman said he initiates conversations with those families, particularly if the child came to the ED with breathing problems. He points out his purpose is to share the medical perspective -- not invade anyone’s privacy.

“If they’re coming in for asthma issues, then I always have that conversation about smoke, whether it’s cigarette smoke or marijuana smoke that affects the lungs. We know short term that it can lead to more chronic asthma-like issues and other respiratory problems for these children,” Dr. Guzman said.

Education

Secondhand smoke falls in the category of preventable injuries that Dr. Guzman works to reduce through education. Maintaining a smoke-free environment can be compared to proactive safety measures like car seats, gun locks and lifejackets that are meant to keep children safe.

“That’s where the grassroots of all this starts. You make a change in one person, it can have a significant downstream effect, which can be life-changing,” he said. “It’s just a matter of continuing to have that conversation.”

As part of the routine exams with her teenage patients, Dr. Phillips discusses the risks of smoking, vaping and drug experimentation. Because recreational marijuana is illegal in Texas, the scent can pose a tricky situation in the pediatrician’s office. Parents aren’t always completely open when Dr. Phillips brings up the topic. She tries to communicate in ways that stick to the facts, avoid judgment, and demonstrate concern.

“I am the kids’ doctor but also their advocate,” Dr. Phillips said. “As doctors, we must walk the delicate tightrope of partnering with parents in the care for the kids.”

The American Lung Association advises:

• No one should be around secondhand marijuana smoke.
• Anyone exposed to secondhand marijuana smoke can have detectable levels of tetrahydrocannabinol (THC) in their systems. THC is the psychoactive or mind-altering “high” ingredient in marijuana. 
• Don’t allow smoking at any time or place children are present.

Dr. Phillips points out that children look to the adults in their lives for guidance.

“Little eyes are always watching,” she said. “Just like we need to eat our vegetables to encourage good eating habits, we need to stay away from things which might be harmful to ourselves or potentially encourage the same habit in our kids.”

Ahh, summer. It’s full of adventure. Or, if your kids are anything like mine — misadventure.

Barely two weeks into our summer break this year I made a visit to urgent care with my 14-year-old to have a fish hook removed from his hand. Totally worth it, he says, since he caught a bass. (Insert my motherly eyeroll and exasperated sigh.)

The summer months can be busy ones in pediatric emergency departments, urgent care centers and pediatrician offices. With kids out of school and looking for fun, they sometimes find trouble that results in injury. Tragically, some of those injuries can be serious, life-altering or even fatal.

“In the summer, kids have all day and night to be able to get into trouble, which is what kids are supposed to do. They're just learning,” said Daniel Guzman, M.D., a pediatric emergency medicine physician at Cook Children’s Medical Center. “As parents, we're just trying to manage the chaos so they don’t make any tragic mistakes.”

Drownings top the list of summertime injuries and causes of death at Cook Children’s, according to Sharon Evans, trauma injury prevention coordinator. In fact, it tops the list nationally. Drowning is the leading cause of accidental death in children ages 1 to 4. For teens, it is the second leading cause of death.

The Center for Community Health, led by Cook Children’s, offers parents and kids water safety and drowning prevention education guides and resources like water-watcher tags and life jackets through its Lifeguard Your Child program. Through this program, anyone can learn how to choose and properly fit a life jacket, how to build a water safety plan, what type of physical barriers should be in place to secure backyard pools and tips for a safe and fun swim time. 

After drownings, the top sources of summertime injuries sending kids to Cook Children’s Emergency Department include:

• Motor vehicle collisions
• All-terrain vehicle (ATV) accidents
• Dog bites
• Falls on playground equipment and trampolines

Dr. Guzman says car and ATV accident injuries are often the most tragic.

An estimated four kids are seen in U.S. emergency departments every hour for injuries related to ATV accidents, according to the American Academy of Pediatrics. From 2017 to 2022, more than 700 North Texas children, most between the ages of 10 to 14, were treated at Cook Children’s Medical Center for serious injuries involving accidents with off-road motorized vehicles.

“The most critical injuries we see from these vehicles are head injuries from kids not wearing a helmet and being ejected,” Dr. Guzman said.

Golf carts can be particularly dangerous.

“With individual ATVs, people tend to put more of the safety equipment on their children, but with a golf cart people feel more secure and protected and less threatened,” he said. “They usually are not wearing a helmet or a seatbelt, so we see these ejections. When you are riding on pavement and it’s head versus pavement, the pavement always wins.”

While common summertime injuries seen at Cook Children’s Urgent Care Centers are more minor in nature than those in the Emergency Department, the sources of injury are often similar.

“We see lots of trampoline and bicycle injuries," said Kara Starnes, D.O, medical director of Cook Children’s Urgent Care Services. “Kids get outside, they're more active and they're more likely to break things. Bicycles, hoverboards, skateboards and trampolines are a big source of fractures or sprains. Fish hooks are more common in the summer, as are lacerations because kids are playing outside more. They get more cuts and things that need to be sewn up in the summertime.”

The primary care pediatrician’s summer risk list looks a little different given their focus on non-emergency care. When temperatures rise, pediatricians see more:

• Infected bug bites
• Sunburn
• Dehydration
• Poison ivy
• Swimmer’s ear infections
• Leg fractures

“Believe it or not, I see lots of leg fractures in little kids from sliding down a slide while sitting in their parent’s lap, because their leg gets caught between the parent and the side of the slide,” said Diane Arnaout, M.D., a pediatrician at Cook Children’s Pediatric Forest Park. “It’s a really dangerous thing to do.”

Pediatricians and Their Own Kids

Given these common injuries, we asked a few Cook Children’s physicians to weigh in on what they never allow their own children to do, or never let their kids leave the house without in the summer. It’s important to note these physicians are not afraid of fun, they just see the negative outcomes of these thrill-seeking activities on a daily basis. For them, the dangers associated with some of these risky behaviors outweigh the entertainment.

Here’s what they had to say:

Dr. Guzman:

“Trampolines are a big thing that I despise. We see so many injuries from those. You get multiple kids on a trampoline and that really becomes a problem. Another thing for me is golf carts. Until kids can drive, they probably shouldn't be in the golf cart unless mom or dad is in there with them. You wouldn't let your kid drive your car. Why would you let them drive a golf cart, ATV or other off-road motorized vehicle at a young age without any experience? They just don't understand the gravity of the responsibility or have the physical dexterity to maintain a vehicle.”

Dr. Starnes:

“I would never let my kids ride their bikes without a helmet because we see some pretty severe head injuries from bike accidents. ATVs are an absolute hard no for me. Also, kids go barefoot a lot in the summer, so we'll see things get stuck in their feet more often, like glass or gravel. To avoid this, I would recommend they at least wear flip flops or some sort of shoe while playing outside.”

Dr. Arnaout:

“I never let my kids leave the house without a water bottle in the summer. We don’t do trampolines without safety nets or bikes without helmets. And ATVs are a no-go for me.”

Bianka Soria-Olmos, D.O., pediatrician at Cook Children’s Pediatrics Haslet

“Insect repellant, sunscreen and big hats for scalp protection are a must for my kiddos. Water safety is my No. 1 topic in the summer and must be the No. 1 focus of parents when their kids are in or near bodies of water.”

RELATED:

• Should My Child Ride ATVs? Cook Children's Experts Weigh In (checkupnewsroom.com)
• Sunburn Relief at Home, When to See a Pediatrician (checkupnewsroom.com)
• Pediatrician Shares Top Beach Vacation Health Tips (checkupnewsroom.com)
• Heads Up: Helmet Tips for Safer Bicycling (checkupnewsroom.com)
• Teen Driver? What to Know Before They Go This Summer (checkupnewsroom.com)

Story by Eline Wiggins. Video by Tom Riehm. Photos by Reilly Ternan.

Every year, children in Texas are prone to vehicular heatstroke. So far this year, eight children have died of vehicular heatstroke across the US, including a 4-year-old boy in Houston, according to noheatstroke.org. In 2022, three children died of vehicular heatstroke in Texas.

On Monday, Cook Children's and Prosper Fire Department teamed up to remind parents about the dangers of hot cars. First responders showed a live demonstration at Cook Children’s Medical Center – Prosper to simulate a 911 call and emergency response for a child left in a hot car. Speakers included Prosper Fire Chief Stuart Blasingame, Viviana Esparza from Cook Children’s Center for Community Health, Meena Guirguis, M.D,, emergency department physician at Cook Children's Medical Center - Prosper and  Larry Lanar Dyer of El Dorado Chevrolet.

A digital thermometer displayed the internal temperature of a second demonstration vehicle to show how high and how quickly a vehicle can heat up. The temperature inside the vehicle surged passed 135 degrees. 

Young children are particularly at risk for heatstroke, or hyperthermia, because their bodies heat up three to five times faster than an adult’s. Because cars heat up so quickly, a tragedy could happen faster than you think.

“Heatstroke in children can happen in minutes, not hours,” said Meena Guirguis, M.D., emergency department physician with Cook Children's Medical Center - Prosper. “If you see a child left in a vehicle, call 911 immediately.” 

A car can heat up 19 degrees in just 10 minutes. And cracking a window doesn’t help. It’s never OK to leave a child alone in a car, even for a few minutes and even if the car is running.

“Parents suffer from exhaustion due to lack of sleep, stress and changes in their normal routing. Any one of these can cause your memory to fail at a time when you least expect it,” according to kidsandcars.org. “Even the best of parents or caregivers can unknowingly leave a sleeping baby in a car; and the end result can be injury or even death.”

Create reminders by placing something in the back of your car next to your child, such as one of your shoes, a purse or a cell phone, is especially important on days when you're not following a normal routine.

To reduce the number of child vehicular heatstroke deaths, parents should remember to ACT:

• Avoid heatstroke-related injury by never leaving a child alone in a car, not even for a minute. Always lock your doors and trunks— including in your driveway or garage. If a child goes missing, check the pool first, and then check the vehicles, including trunks.
• Create reminders. Routinely place something you'll need at your next stop—like a purse, briefcase or cellphone—in the backseat.
• Take Action. If you see a child alone in a car, take action. Call 911.

What to do if you see a child or pet alone in a vehicle from kidsandcars.org:

• Don’t wait for the driver to return. Call 911 right away. The 911 operator can help give you instructions on how to care for the child or pet.
• If the child or pet is not responsive or is in distress, immediately:
  • Get them out of the car by any means necessary
  • Move the them to a cooler environment (somewhere with AC or shade if AC is not available)
  • Remove child’s clothing to let the heat dissipate from their skin
  • Dampen them with cool water or wet rags, immerse in cool water (not in an ice bath) 
• If the child or pet is responsive and not in distress:
  • Stay with them until help arrives
  • Ask someone else if they can locate the driver. You might suggest they ask security of a store manager to page them

Warning Signs of Heatstroke:

• Hot, flush or red
• Slow, weak pulse or strong, rapid pulse
• Lethargy, confusion or strange behavior
• Nausea
• No sweating

Twelve-year-old Adalyn Gibson rarely gets sick. When she fell asleep early one night on the couch, her mom, Chelsey, thought a late night and cheer practice had taken a toll. After vomiting and complaining of a stomachache along with trouble walking, Chelsey made an appointment with the pediatrician.

“When the pediatrician felt the right side of Adalyn’s stomach, she almost jumped off the table because the pain was so bad,” Chelsey said. “Then she asked Adalyn to jump and when she landed it hurt.”

From a Doctor Visit to the Operating Room

The pediatrician told Chelsey to take Adalyn to Cook Children’s – a place Chelsey had never stepped foot in. A sonogram in the Emergency Department revealed an enlarged appendix. José L. Iglesias, M.D., medical director of Pediatric Surgery, would need to perform an appendectomy on Adalyn that night.

“Everything moved fast – within minutes they were getting her ready for surgery,” Chelsey said. “When I met Dr. Iglesias, he had already done two appendectomies that day. I had complete confidence in him.”

Adalyn’s fear of needles quickly disappeared as soon as the child life specialist worked with her on breathing exercises and distracted her with an iPad. She also felt reassured after finding out how many appendectomies Dr. Iglesias performs each year.

“He took time to listen to me,” Adalyn said. “It was a good experience.”

Dr. Iglesias removed Adalyn’s appendix with minimally invasive surgery by creating an incision in her belly button. Since Adalyn’s appendix had not ruptured, she was able to be discharged and went home the next day. Seven days after surgery, she hiked 5 miles through the Smoky Mountains.

Signs of Appendicitis Versus a Stomach Virus

Dr. Iglesias said appendicitis is a common diagnosis in the pediatric age group and his pediatric surgery team performs about 900 appendectomies each year. He calls appendicitis one of the great mimics of other conditions such as stomach viruses, flu or strep throat since it doesn’t always follow the rules. If the child experiences a big change in bowel habits or a lot of vomiting, chances are the cause is a stomach virus.

Symptoms of appendicitis:

• Vague belly pain in the middle – in the early stages
• More focal pain – right lower quadrant
• Nausea (as inflammation increases)
• Fever
• Appetite changes
• Pain when moving

Once symptoms begin, the appendix gets more inflamed and bacteria takes over. After about 24 to 36 hours, the appendix can rupture which increases the risk of worsening infection and makes removing the appendix more of a challenge. Once ruptured, IV antibiotics are required for a longer course.

“It depends on how the body fights it,” Dr. Iglesias said. “Sometimes the body forms abscesses and can turn septic.”

Risks of an appendectomy include infection, bleeding and damage to nearby structures. The risks go up according to the amount of inflammation. Because of the specialists’ experience, the overall risk at Cook Children’s is very low.

A Thriving Teenager

Chelsey said she knew they were at the right place as soon as they walked in the doors. Adalyn is back to her active self with only a few tiny scars. She is an avid reader and actively involved in all sports especially volleyball, basketball and cheer.

“Everyone at Cook Children’s did a phenomenal job,” Chelsey said. 

Sunshine, outdoor adventure, new experiences, camaraderie and memories — it’s the stuff summer camp is made of.

Each summer, more than 14 million kids and adults attend a camp. Doing so can contribute to a child’s love for nature, their willingness to try new things, social awareness, independence and resilience, according to the American Camp Association (ACA).

“Camp really provides kids an opportunity for independence and to be exposed to things they don’t get exposed to during a traditional school year,” said Katie Campbell, Child Life manager and Camps for Kids coordinator at Cook Children’s Medical Center. “It’s an opportunity to challenge themselves to try something new, to make new friends and to establish community with their cabin.”

But sending your child off to camp can be scary. How do you know it’s a safe place for them physically, mentally and emotionally? Are the people you are trusting to care for your child at camp qualified?

Choosing a Camp

The ACA is a good place to start when determining what to look for in a camp, according to Megan White, camp director of Camp John Marc, a residential Dallas-Fort Worth-based camp serving children and families living with a chronic illness and physical challenges, and a Cook Children’s Camps for Kids partner. The ACA is an accrediting body for camps and is considered the industry’s gold standard for best practices when it comes to safety, staff training and risk management.

“It's a resource that is intended to be used for any parent at any stage to learn about the camping industry,” White said. “I would definitely encourage parents to read up on and learn about our best practices in the camping industry and to find out the qualifications and accreditations of the camp before you send your children to one.”

What makes a good camp? According to a study commissioned by the ACA, campers who experience a sense of belonging, supportive youth-staff relationships and learning that is both experiential and reflective report the most positive attitudes and outcomes from camp.

But safety should be a top priority, too, White says.

“The two most important things that I would say are what are their abuse prevention and camper safety protocols as it relates to mitigating risks at camp.” White said. “One thing that we always say here at Camp John Marc is we can have the best camp cookies, the most comfortable camp beds or the coolest camp store, but if our campers aren't safe, then we’re not doing our job to the best of our abilities.”

While some of this information can be found on a camp’s website, White says to never be afraid to pick up the phone and talk directly to the camp director about their protocols and policies.

“Sometimes this will give you a more honest read on how important these things really are to the camp than what you can get from a manicured website,” White said.

Tips for Parents

If you are preparing to send your child off to camp, be it sleep away or just for the day, White and Campbell share the following tips for making the experience a positive one for you and your camper. 

●       Don’t be afraid to ask questions about certifications, camper-to-counselor ratio, staff training, camp schedule, etc.

“Communication is key. Ask questions about the schedule the camp follows, where they get their staff and the ratio in regards to campers and counselors. That's important information that needs to be pretty easy to get and for families to inquire about. Don’t assume that it's a popular camp so it will be safe, but make sure that, for those things that are important to you around your child's safety or knowing who will be taking care of them, you get an answer.” – Katie Campbell

“I encourage parents not to get distracted by all of the cool amenities but to focus on the two most important things of how do they train their staff as it relates to preventing child abuse, and what are they doing to ensure a culture of safety. What does that look like for all of their employees, including their kitchen and housekeeping staff and their facilities team? What is their camp culture of safety? These are questions any camp director should easily be able and willing to answer.” – Megan White

●       Make sure your child understands personal boundaries and how to ask for help if they feel uncomfortable.

“I really think that parents should have a conversation with their kids at any age about appropriate and inappropriate touch. We teach that a camper should never be touched anywhere that their swimsuit would cover. For males and females alike, that is a good benchmark for their physical safety. I also encourage parents to have a conversation with their kids about asking for help and give their children permission to tell someone they are uncomfortable — whether that's someone in my cabin is making me uncomfortable or an adult that is in the area is making me uncomfortable. Give your children the permission and language to find another adult they trust and ask for help.” – Megan White

●       Include your child in the process of choosing and preparing for camp.

“Camp is good for everyone, but not every camp is good for every child. You have to find the right camp for your son or daughter to make sure it's meeting their needs or their interests.” – Megan White

“I think it’s important to involve kids in the whole process of shopping or gathering what is needed for camp and allow them to help pack their bags so that they understand the packing system you are using. This makes them more confident about the new experience.” – Katie Campbell

●       Be prepared for outdoor activities and weather changes. 

“One minute it could be hot and 100 degrees and the next it could be storming. Make sure that your child has everything they might need for the week, even if it seems random. We don't necessarily always need a rain poncho in Texas in July, but just having it and other little things like a flashlight might turn out to be really useful.” – Katie Campbell

“Pack plenty of sunscreen and a water bottle. We always recommend closed-toe shoes so that you don't stub a toe or get a splinter in your foot.” – Megan White

●       Send them with things that will make them feel more at home.

“If there are things from home that help kids feel safe — a stuffed animal, a favorite blanket or something like that — make sure those things are included.” – Katie Campbell

“I encourage parents to send their child with a journal or give them a place or a tool to help them reflect and write about their experience. A Polaroid camera can be great for this, too. A lot of times children get home and parents ask about camp and their campers are too tired or can't remember what happened. So give them at least some tools to record their memories and experiences.” – Megan White

A case of measles was confirmed in a pediatric patient last week in Texas, according to Texas Health and Human Services. The last confirmed measles case in Texas was in 2019. Cook Children’s is sharing what parents and caregivers should know.

Measles is highly contagious. It causes severe pneumonia and can cause a progressive form of encephalitis or inflammation of the brain.

Measles spreads through the air when an infected person coughs or sneezes. You can get measles by being in a room where a person with measles has been, even up to two hours after the person has left. An infected person can spread measles to others even before knowing he/she has the disease.

Some of the more common measles symptoms include:

• high fever (may spike to more than 104° F),
• cough
• runny nose
• red, watery eyes (conjunctivitis)
• rash (3-5 days after symptoms begin)

If you think you have measles or may have been exposed, isolate yourself and immediately call your health care provider and your county health department. It is recommended to wear a face mask.

Even children who recover from measles, especially those younger than 2 years old, are still at risk for developing SSPE – delayed brain inflammation – seven to 10 years later.

Two doses of MMR vaccine provide the best protection against measles for your child. The Centers for Disease Control and Prevention recommends that all children receive two doses of the measles-mumps-rubella (MMR) vaccine – one at 12 to 15 months old and another at 4 to 6 years old. One dose is 95% effective against measles and two doses are 97% effective.

People at high risk for severe illness and complications from measles include:

• Infants and children aged <5 years
• Adults aged >20 years
• Pregnant women
• People with compromised immune systems, such as from leukemia and HIV infection

According to the Centers for Disease Control and Prevention, 16 cases of measles have been reported this year as of June 8, 2023. The CDC warned in November 2022 that a record of nearly 40 million children missed a measles vaccine dose, leaving them susceptible to infection.

Protection

The best protection against measles is MMR vaccine. MMR vaccine provides long-lasting protection against all strains of measles.

Here at Cook Children's, we follow the same guidelines that we recommend to our patients and their families.

• Vaccines save lives
• Vaccines are safe
• Vaccines protect those that cannot be vaccinated
• We vaccinate our own children

Nicholas Rister, M.D., of the Cook Children's Infectious Disease team, answers questions about measles and shares what parents and caregivers need to know.

What should I do if my child has only received one dose of the MMR vaccine so far?

If your child has received only a single dose of the MMR vaccine and is >4 years of age, then they are due for a second dose which can help boost their immunity.

In the meantime, the single dose they have gotten should provide substantial protection from severe disease. This is great for their safety but can make how they may present more subtle. While they may still have a fever, cough, red eyes, and a rash, these may be much more subtle or absent. However, they will still be contagious and can infect other children and adults who are non-immune.

If your child is only partially immunized and has some of these symptoms, especially a red rash that starts on the head and spreads downwards, be sure to ask your pediatrician about measles to review if testing is indicated.

How do I know if my child has been exposed to measles?

In many cases, you will not unless you are contacted by the health department. Sometimes an outbreak will occur through schools or daycares, and you will be alerted through these contacts as well. However, if your child or close contacts develop the constellation of symptoms above, be sure to discuss with your physician about the need for monitoring and testing.

How does measles transmission occur?

Measles transmission occurs via person-to-person contact as well as airborne spread. Infectious droplets from the respiratory secretions of a patient with measles can remain airborne for up to two hours. Therefore, the illness may be transmitted in public spaces, even in the absence of person-to-person contact.

Additionally, if someone is exposed to measles and is not immunized, they have a 90% chance of contracting the disease. It is highly contagious without vaccination.

What are the physical signs of measles in children?

The classic findings of measles in addition to fever and rash are cough, pink eye, and a runny nose. These are often prominent. The rash is also unique in that it starts on the head and spreads downward over the body. While other viruses can cause some or all of these symptoms, the constellation should raise the question of measles if there has been a known exposure or if a patient is unimmunized.

Where do measles come from?

Humans are the only natural source of the measles virus. While it could be spread in a laboratory setting, virtually all disease we see is from natural infection between person-to-person and airborne contact.

Information from Cook Children’s and the Centers for Disease Control and Prevention:

• CDC: Top 4 Things Parents Need to Know About Measles
• CDC: Measles
• Go here to view photos of measles from the CDC.
• What to know about vaccines and immunizations | Vaccine fact and fiction | Cook Children’s

Related content on CheckupNewsroom.com:

• Infectious Diseases Doctor Shares Why Measles Vaccination is So Important (checkupnewsroom.com)
• Infant Immunization Week Encourages Babies' First Shots (checkupnewsroom.com)
• Get Immunized for a Healthy School Year (checkupnewsroom.com)

PGA golfers Paul Haley II and Cameron Champ were here to bring smiles to patients.

Cook Children’s Child Life staff divided up into four teams to decorate and set up the holes – each with a different theme.

All holes have a bedpan at the end – that’s why it’s called the Bed Pan Open!

Cook Children’s has treated nine drownings so far this year, one of which was fatal. As the weather warms up, parents and caregivers should take time to review how to keep their young children safe around water.

With the recent news of a Tampa Bay Buccaneers player’s 2-year-old daughter drowning in their swimming pool, we are reminded of how quickly water can turn into a tragic accident. It only takes a minute for a child to drown, and most of the time it is silent.

According to Safe Kids Worldwide, drowning is the leading cause of injury-related death among children between 1 and 4 years old. Even if a child survives a drowning, it's possible to have lasting neurological effects. Cook Children’s leads a campaign called Lifeguard Your Child for parents and caregivers to learn how to protect children in all kinds of water.

Drownings can occur even with many adults present. One key tip is to designate a “water watcher” – a responsible adult who agrees to watch the children in the water without distractions.

Sharon Evans, trauma injury prevention coordinator at Cook Children’s, said it is vital for parents and homeowners to realize they must be on guard at all times if they have a pool.

“All of the barriers along with swimming lessons can prevent drownings,” Sharon said. “Not only having these barriers in place but ensuring the alarms work and are on and the gates remain closed is important as well.”

Drownings can happen silently and quickly. A submerged person might not attract attention or appear to be in danger. Younger children most often drown in swimming pools by falling in while unsupervised. Parents can put barriers in place to help prevent a child from accessing the water or make it more difficult to access when an adult is not present.

Top Pool Barriers
The more barriers in place, the safer the child will be.

• Four-sided isolation fences with self-latching gates
• Alarms (pool, door, gate)
• Automatic pool covers
• Doorknob covers and high locks on doors leading to the outdoors
• Reroute dog/pet doors that have direct access to the pool area

Lifeguard Your Child

Cook Children’s initiated a drowning prevention campaign called Lifeguard Your Child in 2015 in response to a high number of drowning injuries treated in the Emergency Department and medical center that year. The Lifeguard Your Child campaign is spread through the Safe Kids North Texas Coalition, which is based in Fort Worth and led by Cook Children’s.

The campaign’s strategies include Cook Children’s Loaner Life Jacket Stations at many lake entry points across the region. Families can go to the stations to find U.S. Coast Guard-approved life jackets in a variety of sizes with easy tips for a proper fit.

Safety tips for home swimming pools: 
• Restrict access by installing door locks high out of children’s reach. Door and window alarms can signal if someone leaves the house. 
• Install four-sided fencing around pools with a self-latching gate that only opens out. The fence should be at least 4 feet (preferably 5 feet) high. 
• Remove all toys and floats from the pool area so children are not tempted to get close to the water. 
• For above-ground pools, make sure the ladder is removed and not accessible when it’s not swimming time. 
• Consider a pool surface alarm to alert if anyone/anything falls into the water. 

Safety tips for the bathtub: 
• An adult must stay at the side of the tub in reach of the child. 
• Pay attention. This is not the time for multitasking. 
• Ignore distractions like the doorbell or phone calls. 
• Drain the tub after each use. 
For more information about drowning prevention, go to www.lifeguardyourchild.org.

On Tuesday, Cook Children’s Health Care System celebrated the grand opening of a new space dedicated to the siblings of children with medically complex needs. It’s called the Panda Cares® Center of Hope Sibling Support Center and is located inside the newly expanded Dodson Specialty Clinics building at Cook Children’s Medical Center – Fort Worth.

The Panda Cares Center of Hope Sibling Support Center offers the siblings of Dodson Specialty Clinic patients a place to play, create and connect with other children whose families face similar challenges while their brother or sister attends clinic appointments. It also relieves the stress of parents and caregivers so they can concentrate on their child’s medical appointments knowing their other children have a safe and supportive space dedicated to their well-being, too.

The complex medical needs of a child with a chronic condition or life-changing injury can strain the mental and emotional health of the whole family, including brothers and sisters, according to Audra Trussell, coordinator of the Panda Cares Center of Hope Sibling Support Center.

“We are really focused on the sibling’s emotional and psychosocial care,” Trussell said. “A lot of times, they don’t need as much attention as their chronically ill brother or sister so they may feel a little left out and dragged around from appointment to appointment. At this center, we’re able to focus on those kids, give them the care they deserve as well, help them process their feelings and what they are experiencing, and make them feel like a member of the Cook Children’s family, too.”

The center is staffed by Trussell, who has a background in child development, and Judith Siharath, Panda Cares Center of Hope Sibling Support Center assistant, who has experience in psychology and child development. Cook Children’s volunteers will also be on hand to assist.

Everything for the Child

The Panda Cares Center of Hope Sibling Support Center is a therapeutic activity center full of everything for the child, from developmentally appropriate toys and sensory play items to arts and craft supplies. Each day Trussell and Siharath will offer child visitors a guided activity that sparks their imagination, creativity and conversation.

“Every day we'll have a different activity to do that will open up a new discussion for our sibling guests because, given their family’s situation, they might not get that opportunity outside of here, and we want to make sure they feel like they are the center of attention,” Siharath explained. “For example, we have an activity where kids can make a rainbow with colors based upon their feelings. We would ask them questions like, ‘What colors represent you?’ and ‘Which color represents your inside and outside feelings?’”

The questions are meant to help kids connect with other children who also have a sibling with a medical condition and may be experiencing similar emotions related to their brother or sister’s health.

“When we're all sitting around the table and these open-ended questions are being asked to help draw the child out and give them an opportunity to speak up, they'll get to hear other siblings say some things that they may not have felt like they could say out loud, and feelings that they’ve had regarding their sibling that is a patient,” Trussell said. “So that peer-to-peer support is an important piece that we want to emphasize here, too.”

Connecting the Dots for the Whole Family

Together with other Cook Children’s sibling support programs, The Panda Cares Center of Hope Sibling Support Center connects the dots of family-centered care at the health system. It’s an extension, Trussell says, of the work Child Life Services does to care for the mental and emotional health of the whole family through offerings like the Cook Children’s Sib2Sib Program™. Through weekend workshops, camps and family events, Sib2Sib gives patient siblings the opportunity to express themselves and their feelings, receive undivided adult attention, learn coping skills and connect with peers living in similar circumstances.

Sometimes a child will express fear or misunderstanding about their sibling’s health, treatment, or injury while visiting the Panda Cares Center of Hope Sibling Support Center or any of Cook Children’s sibling support programs. For example, if a child has experienced a pet being “put to sleep” they sometimes correlate that term with death, and may think their brother or sister is going to die because they are having a procedure where they will be put to sleep.

“When we hear those things we’ll be able to share that with their parents and connect all of them with a Child Life specialist that can help explain what the procedure is, what's really going to happen medically, and what all the terminology means in good, child-appropriate language that they understand,” Trussell said.

Together, all of these programs and services connect the dots of family-centered care at Cook Children’s.

The Panda Cares Center of Hope Sibling Support Center at Cook Children’s is made possible through the support of Panda Cares®, the philanthropic arm of the Asian dining concept Panda Express®, and its partnership with Children’s Miracle Network (CMN), of which Cook Children's is a member. Following a multimillion-dollar commitment to Children’s Miracle Network Hospitals to fund Panda Cares Centers of Hope, Panda and CMN Hospitals have debuted Center of Hope locations at several hospitals in the U.S. from California and Texas to Hawaii and Washington D.C.

The Panda Cares Center of Hope Sibling Support Center at Cook Children’s is open from 8 a.m. to 5 p.m. Monday through Friday to siblings, ages 3 to 11, of patients who have a clinic appointment. Children may attend the center for 90 minutes per visit. It is free to families. Reservations are not required but parents will be asked to complete a registration and consent form. 

National Child Abuse Prevention Month brings awareness to recognizing and reporting child abuse. It also recognizes the importance of families and communities working together to strengthen families to prevent child abuse and neglect. Texas consistently has some of the highest child abuse and neglect rates.

Child abuse and neglect include all forms of physical and emotional harm, sexual abuse, neglect, and exploitation that result in actual or potential harm to the child's health, development or dignity. Within this broad definition, five subtypes can be distinguished – physical abuse; sexual abuse; neglect and negligent treatment; emotional abuse; and exploitation.

Each of the 1,675 pinwheels displayed at Cook Children's reflects a child abuse visit. Neglect is the No. 1 type of child maltreatment. One in seven children has experienced child maltreatment in the past year. Texas is the No. 1 state for child abuse fatalities.

Led by a pediatrician who is board certified in child abuse medicine, the Cook Children's CARE Team provides medical and forensic evaluations for victims of physical abuse, neglect and drug exposure, sexual abuse screening examinations and preventative education for victims of child maltreatment.

Resources:

• The Cook Children’s Child Abuse and Neglect Prevention website and a phone number to text for local resources.
• Text ‘FIND’ to 67629 for local resources and support.
• Call 1-800-252-5400 to report abuse. Visit txabuseonline.org to report abuse online.
• Child Abuse and Neglect Prevention (cookchildrens.org)
• Go to saynotoabuse.org for additional prevention and support resources.

Since the school shooting in Nashville last week, Lisa Elliott, Ph.D., psychologist at Cook Children’s, has seen an increase in conversation about school shootings with her patients and their parents who need help as well.

“It’s on everyone’s minds,” said Dr. Elliott, who has been a psychologist for 29 years. “Many of the moms have brought in their kids and asked for help themselves in navigating this.”

Dr. Elliott relates to these moms. School shootings now hit differently as her son is a middle school principal.

“Prayer gets me through,” she said.

We asked Dr. Elliott how to help children process this tragedy, along with tips for parents themselves. 

You can also listen to the recent Raising Joy Podcast with Dr. Jillian Peterson, founder of The Violence Project, as she informs listeners about her research findings related to mass shooters and what parents can do to help prevent the next school shooting.

What advice do you have for parents who are struggling with how to share the news of the school shooting with their children? How do they know when it is appropriate to talk with them?

The most critical part of reacting to this in front of children is to stay calm and always be honest with your responses.

To begin with, it all depends on how the kids process and handle emotions. You can wait to see if they say anything about it, and if they do, address it right away. I can tell you that late elementary, middle and high school students are talking about it. Do not minimize their concerns and immediately correct any inaccurate information. Let them talk first and lead the conversation, finding out what issues they want to talk through

Walk through the worst-case scenarios and talk to the school if needed, letting your child know all the safety measures in place. For some children, this kind of information empowers them.

Also, help them to know how to be observant – to be the helpers. We have to instill hope – Fred Rogers from Mister Rogers shared that his mother told him to “Always look for the helpers” in times of sorrow, tragedy, fear and anxiety, because if you also see the helpers you know there is hope.

At home, reinforce ideas of security and safety and maintain routines, with frequent check-ins.

How can parents reassure their children if they are struggling themselves to feel that everything will be OK?

Remember that to be the best parent to your child, you have to take care of yourself first – just like the airplane scenario with oxygen masks when parents are told to put their mask on before their child. It is important to model healthy coping as children take their cues from you. They need to see we care, and it is OK for them to see you express emotion, however, you do not want to overwhelm them. 

Effective ways to cope include speaking with other parents at school, forming/joining a parent support group, leaning on family members for support, eating nutritious meals, exercising, meditating, praying and speaking with your child’s school counselor for advice on resources or books on supporting yourself and your family through a school-related tragedy.

How do parents know when their child’s anxiety is beyond what they are able to help with and they need to pursue professional counseling?

Watch for these symptoms – an increase in physical complaints such as stomachaches or headaches, change in appetite, nightmares, sleep disruptions, separation issues, panic symptoms, not wanting to participate in social activities, and increased anger.

If any of these persist for more than a few weeks, seek professional help.

How do we shield our children from too much information with social media, TV, etc.?

Do all you can to limit your child’s exposure to the news, and even adult conversations, as children are always listening. We know from trauma research that violent images can cause secondary trauma. And parents need to model that as well by limiting exposure.

What if children do not want to go back to school after hearing the news?

Let your child have one mental health day and do a lot of pouring into them and making memories together. Talk with them about how to handle problems and let them know we can still find joy. Do not let it be more than one day or it will only exacerbate the fear.

What are some tangible ways parents can provide comfort to children?

Keychains with a small photo frame where you can place a family photo have helped many of the parents I see comfort their children. Attach it to your child’s backpack or lunchbox so they feel close to family while at school. Matching bracelets they can wear also help – anything that makes them feel connected to you and your family.

By Baylee Simmons, CCLS, Child Life Specialist at Cook Children’s Neonatal Intensive Care Unit

A child life specialist is commonly known as someone who can help a child understand and cope with his or her hospitalization, diagnosis or medical experience.

That being said, I am often asked what role a child life specialist plays in the Cook Children's Neonatal Intensive Care Unit (NICU) where patients are far too young to talk, comprehend preparation for procedures, diagnosis education or participate in play and therapeutic activities typically provided by child life. 

Great question! Child life in the NICU looks very different than in other areas of the hospital. Still, our goal is the same -- to provide support and interventions that promote emotional safety, improve patients' and families’ ability to cope, and reduce the negative effects of unavoidable stress and trauma they endure.

Stress and coping in the NICU

When an infant is born prematurely or with medical needs leading to a NICU admission, the whole family is affected. Most parents expect to take their baby home to a quiet, calm environment where they can heal, bond with this new baby and begin adjusting to life with a new member of their family.

A NICU admission can turn all of those expectations upside down. For the first few days, the mother is often still admitted to another hospital, the delivery hospital. While this is necessary for moms to heal and recover, it creates a lot of stress for the family. The baby’s father and/or other family members have to navigate where to spend their time, who will care for any children at home and so much more.

Patients admit to the NICU for many, many different reasons and these admissions range from a few days to many months depending on the severity of their condition and medical needs. Over the course of a patient’s admission, the stress may change but continues to bring new challenges.

Some parents grieve their first days or months with this baby not looking how they thought, some struggle to feel connected with their baby amidst the restrictions and treatments needed to grow or heal, or wonder how to support, explain things to and include the baby’s siblings without overwhelming them.

Other families find themselves unable to understand/process their baby’s diagnosis and care, juggling time between work and the hospital to maintain income, or processing a tragic situation where their baby might die and making decisions about how to honor their child’s memory or explain that to their siblings. All of that stress impacts a family’s ability to cope with the hospitalization and ultimately provide a secure, nurturing environment for their baby, which plays a critical role in their development and health.

Child Life in the NICU

As a NICU child life specialist, I can often be found hanging a name banner in a new patient’s room, making ink prints of tiny feet or seated on the couch next to an overwhelmed parent listening to whatever troubles their mind that day. These are a few ways I begin getting to know a family, what is meaningful to them, and what individual stressors or challenges they bring to the NICU experience.

This careful assessment allows me to identify what support, education or therapeutic intervention they might benefit from on any given day. I strive to give families the tools they need to be successful in the NICU environment and overcome the stress they inevitably encounter here. That could be using my knowledge of child development to help validate or explain why their 4-year-old daughter is regressing and acting out uncharacteristically or offering a more simplified explanation of new medical equipment being used on their baby using a teaching doll or other resources to strengthen the family and siblings’ understanding. 

I make ink prints or take photos of big moments and milestones babies meet to help encourage their parents and foster that connection throughout their stay. We celebrate holidays and “firsts” throughout the unit to bring a little bit of joy or normalcy into a place where most families feel that they are missing them. And on the darkest days when families are told their baby will not be coming home with them, I offer bereavement support and the opportunity for families to choose how they will honor and memorialize their child’s last moments of life.

Child Life exists in the NICU to support the WHOLE family so that they can better care for and support their baby both in our unit and as they transition home.

Betzavel Segura’s trip to the Down syndrome clinic at Cook Children’s gave the 4-year-old girl the chance to show her skills and her challenges to a variety of specialists.   

She named the colors she knows. She jumped around. And in a game for speech therapy, she practiced making animal sounds.

“For her, it was playing. But for the medical providers it was watching to see what she would do,” said mom Erika Quijas, who calls her daughter Betzi for short.

Betzi has a love for dolls, a knack for puzzles, and a happy attitude most of the time. But she struggles with pronunciation, and she gets frustrated when others don’t understand what she’s saying. And she’s picky about the texture of certain foods. Her parents wanted some professional guidance. 

In a span of four hours at the clinic, Betzi was examined by a pediatric geneticist and met with experts from multiple fields related to her Down syndrome diagnosis. She had fun at the appointment -- and her parents came away with practical advice and information to take back to Betzi’s primary care doctor and teachers in Mineral Wells. 

Every year, about 5,000 babies in the United States are born with Down syndrome, a disorder caused by an extra chromosome. Cells dividing in the embryo have three copies of chromosome number 21 instead of the usual two. The condition can lead to heart defects, hearing loss, eye disease, thyroid problems and other medical concerns. Feeding, development and learning can be affected. 

World Down Syndrome Day connects today’s date (March 21) to the three copies of the 21^st chromosome in a symbolic way to help raise awareness. It’s an occasion for Cook Children’s to spotlight our clinic as a tool that educates, addresses concerns and gives encouragement to families.

First, the full name … Nannie Hogan Boyd Down Syndrome Clinic and Resource Center, affiliated with the Cook Children’s Genetics Clinic. Cook Children’s Rehabilitation Services, Child Study Center, the Down Syndrome Partnership of North Texas and the Nannie Hogan Boyd Trust support the program. The clinic has served an estimated 500 children and teens since it opened.   

“The design was to provide a more comprehensive program for families with children with Down syndrome so they could get all their evaluations in one place,” said pediatric geneticist Mary Kukolich, M.D., who started the clinic in 1998 and continues to lead the team.

Dr. Kukolich said participants across a wide region of Texas are attracted by the convenience of seeing multiple specialties in one stop. Enrollment is limited to four or five patients at a time. Each receives a personalized itinerary.

Clinic Overview

What’s offered? Dr. Kukolich does an exam and genetics consultation to check the patient’s growth, heartbeat, muscle tone, thyroid function and more. Blood tests and X-rays might be ordered.

Available as a bonus: speech therapy, occupational therapy, physical therapy, audiology, nutrition and psychology. The patient’s caretakers choose which specialties they want to go to for screenings or consultations.

When? Every other month. Most slots for the 2023 clinics are already filled, but more dates might be added depending on the level of interest.

Who can sign up? Anyone with Down syndrome from ages 3-18 is welcome. If the child is not already established as a Cook Children’s Genetics patient, a pediatrician’s referral is needed. Clinic organizers recommend a visit every three years.  

Where is it located? 750 8^th Ave., Suite 200 in Fort Worth

What’s the cost? The genetics consultation and audiology visits are billed to insurance; no charge for the rest. 

Clinic coordinator Audrey Hicks, LMSW creates an individualized schedule for each participant.

“I call the patients a month before their appointment and I talk to the parent about how the child is doing. We discuss their development and health, and then we decide which specialists they need to see,” Hicks said.  

“A lot of these kids already have therapies maybe in school or maybe private,” she said. “The clinic gives them an opportunity to have people with fresh eyes who can take another look and give them a new perspective. At the end of the day, each family gets a full report of the findings and suggestions from each of the specialists.” 

Therapists might recommend an extracurricular activity, a new behavioral technique to try, or a resource the family wasn’t aware of. Parents are urged to ask questions and express their concerns on topics such as puberty or options after high school.   

“Families with kids with disabilities can feel very isolated, and this is just another way to help support them, to make them know that we care about them, that we are trying to help the whole picture,” Hicks said.

Betzi’s Experience

When she was 7 months old, Betzi had surgery at Cook Children’s to repair two holes in her heart. She travels to Fort Worth for routine check-ups for cardiology and pulmonology care, as well as eye and ear exams.    

Texas Early Childhood Intervention (ECI) provided speech therapy and physical therapy until Betzi turned 3. Now that she’s 4, her speech and occupational therapy happen at school in Mineral Wells. Her dad, Armando Segura, follows up at home with extra speech practice in fun ways that Betzi enjoys. Armando and Erika were eager to seek out additional input from the Down Syndrome clinic at Cook Children’s. 

Here are highlights from their visit in November 2022:

• The physical therapist watched Betzi jump and checked her hips and muscle tone. The therapist recommended shoe inserts to support her weak ankles.
• The speech therapist advised Betzi’s parents to exaggerate the pronunciation of words while Betzi watched their mouths. Erika asked if talking at home in both English and Spanish was making speech harder for Betzi. (Answer: No.)
• The nutritionist suggested chopping fruits and veggies into smaller bites – or mashing them into smoothies – to work around Betzi’s issue with food textures.
• The psychologist discussed strategies to keep Betzi from flinging her plate when she wants attention at dinner. 

Betzi stayed in a good mood for the entire four-hour session thanks to the juice and snacks her mom packed. The kindness of the clinic staff played a role too in keeping Betzi comfortable and entertained. “They were just really nice and patient,” Erika said.

Erika especially appreciated the tips that the specialists shared and the summary report at the end. She encourages other parents to utilize the clinic. And Erika wants everyone to know that like all people with Down syndrome, Betzi is much more than her diagnosis.

“She plays, she cries, she gets mad just like any other kid does. There’s no reason to treat her differently.”

Schedule an appointment at the Down syndrome clinic by calling 682-885-3951.

By Ashley Pagenkopf, MS, CCLS, Child Life Specialist at Cook Children's

Family-centered care is a pillar of Child Life Services and holds high value within our Cook Children’s system. We must consider each person in a patient’s family.  The idea of family systems theory is that when one person is affected by a circumstance, the whole family is affected. Everyone feels the experience in some way.

Recently, my family had the opportunity to receive services from an organization that serves patients and families with ongoing health care needs. This organization sends a box each month for a year to the patient, but they also include items for the patient’s parents and siblings. The first box we received had T-shirts for all of us with individualized cards and small gifts. My girls each received an envelope from this organization full of Valentines from lots of people.

This organization connected us with another organization that provides birthday cakes for patients and their siblings. Each of my daughters received the most stunning cakes donated by local bakeries for their recent birthdays. Both of these organizations encompass the true meaning of family-centered care, by caring for the whole family.  

Child Life Specialists focus their care not only on the patients that we serve each day but also on the other children in their families. It may be siblings, cousins, best friends, or others. Whoever may be impacted by the experience of the patient should also be cared for and receive services. Often, Child Life Specialists will provide the assessment, preparation, support, education and play for siblings and other children within a patient’s support system.

The emotional safety of the whole family matters. We want to consider where each person finds themselves during the current experience. Family dynamics, past medical experiences and traumatic experiences, the family’s beliefs and more help child life specialists provide the best services to each family member. While the patient may be coping very well with their current circumstance, it is possible that a sibling or parent is having a very difficult time and their needs may be different than that of the patient.

Years ago, my youngest daughter was admitted to the NICU following her birth. At the time I had a 2-year-old and a 4-year-old at home. My oldest was allowed to come up and visit, meet and hold her newest sister, but my middle daughter was too young for the visitor guidelines in the NICU. We did everything we could to make that time better for everyone. The girls would come to the hospital and eat meals with me while I stayed at the hospital. We frequented Build-A-Bear and made the most of the indoor and outdoor playground.

When one family member has a medical crisis, the rest of the family juggles to handle it all. My middle daughter really struggled because, at the time, she was almost fully potty-trained, but this time caused her to regress.  She was so ready to meet her sister and have her mom back at home. She melted down at every good-bye and every greeting. This is the perfect circumstance for Child Life Specialists to help create some bridges for the family. We took pictures and shared them with her and told her exactly what her sister was experiencing. She drew pictures for her baby sister and helped build her a bear at Build-A-Bear. Each thing that we did, helped us acknowledge that she was a part of this family unit even when we couldn’t all be together.

Supporting caregivers, parents and siblings

In addition to the patient, we want to provide preparation and support to the caregivers and siblings of each family as well. We want everyone to understand the steps and reasons for the medical care we are providing. When the patient is getting an IV, it is important for the sibling observing to also know what is happening and receive some preparation and support around this procedure. When a family member visits the ICU for the first time, it is helpful for child life to prepare them for what they will see and hear in the unit.

It is also important for caregivers and siblings to be educated about new diagnoses and understand at the same level as the patient. Child Life Specialists can provide medical play and education to siblings or close family of a patient. Child Life Specialists can include siblings in debriefings of traumatic experiences and often in bereavement situations while helping them process what they may be feeling and experiencing.

We also want to provide normalization to the family as a unit, such as utilizing volunteer services while a caregiver attends a sports function for a sibling. We also provide developmentally appropriate play for siblings while they are visiting to make sure that activities are available not only to patients but to their siblings and families as well.

At Cook Children’s, we strive to provide family-centered care in all areas of the medical center. From sibling support groups to camps to parent mentors. We also have several ways that we support families and siblings.

Family Centered Care programs and resources at Cook Children's

 Family Centered Care at Cook Children's provides many programs, including the Parent Mentor Program, the Family Resource Library and our Parents as Partners program.

Our parent mentor program provides visits and phone calls to inpatient parents and caregivers to offer support and fellowship. Our Parents as Partners program includes our Family Advisory Councils that you will find throughout the medical center in different areas and departments. Involved families can help guide and direct our initiatives utilizing their own experiences. Parent support groups are also returning post-COVID. Cook Children's also has a new initiative for self-care for families.

We also have a whole program for siblings called Sib2Sib created by Child Life Specialists. This program provides so many opportunities for siblings and they are currently working on creating a website just for siblings. We have resources that include a sibling tour of the hospital led by Brie and Steve, two of our facility dogs. We also have information available for developmentally-based sibling needs. There is also the upcoming opening of a Sibling Support Center dedicated solely to the siblings that we serve every day. For questions about sibling services, you can contact Sib2Sib at sibprogram@cookchildrens.org.

Child Life Specialists advocate and strive to ensure the emotional safety of the entire family unit. These experiences touch each person in some way, and it is important to acknowledge each individual’s needs as well as the needs of the family unit. Cook Children’s is dedicated to providing family-centered care in every situation.

The newly constructed expansion to the Dodson Specialty Clinics opens its doors Monday, March 20. This 240,000-square-foot expansion adds more space for patient families and providers and brings six additional specialties together under one roof.

On March 20, the Dodson Surgery Center, Dodson Central Registration and Dodson Sterile Processing will move. Periodically through June, other specialty clinics will move to new locations in Dodson Specialty Clinics.

When patient families walk through the doors of the newly expanded Dodson Specialty Clinics, Stan Davis, Chief Operating Officer of Cook Children’s Medical Center, hopes they feel valued.

“Most of the patients who come here have repeating needs and we are building a lifelong relationship with them and their families,” Davis said.  “After many focus groups to understand our patient families’ desires and needs for this space, I hope they feel that we heard them.”

Cindi Coker who has been visiting Cook Children’s for 20 years, already feels heard. Cindi’s son, Clayton, has complex medical needs so she knows firsthand the features that make visits to the hospital easier for patient families. From working with Security on the handicapped parking layout to advocating for a café and companion care restrooms for the older kids, Cindi has provided invaluable input.  

“It speaks volumes that Cook Children’s is taking the patient experience to the next level,” Cindi said. “It means a lot to us.”

Veronica Tolley, vice president of Primary and Specialty Services at Cook Children’s, is looking forward to watching the patient families enjoy the new features. “The feedback we’ve heard for years is coming to life and will be evident in their experience,” Tolley said. 

All Services Under One Roof

A lack of space for new practices on campus matched with the exponential growth of physicians, teams and patients led to the vision of the expanded Dodson Specialty Clinics.

“Many subspecialty groups came into existence after the original Dodson space was built,” Tolley said. “This building is a testament to not only adding new services but every existing service growing.”

Now all services will be under one roof – a welcome improvement for many patient families such as those who visit Urology. Instead of having to park twice and walk across an intersection in one day, families will now access Urology and Radiology in the same building. 

Spencer Seals, vice president of Construction, Real Estate and Facility Planning, has been involved with every aspect of planning since its inception. 

“There is nothing more frustrating to a patient family than to go different places for services,” Seals said. “That is the reality for the vast majority of our families and now with a consolidation of clinics in a hub, they will have everything they need.”

Not only were patient families surveyed but employees, too. A survey of staff asked them about top priorities which resulted in features such as food options and access to natural light.

Seeing the Building Through a Patient’s Eyes

Kim Arnold, space utilization and transition manager, led the team that collaborated with Patient Family Services to simulate the patient experience throughout Dodson Specialty Clinics from beginning to end. Patient families walked into the building and interacted with staff just as they would on a typical visit.

“The transition and patient simulations are focused on getting in front of and being prepared for change,” Arnold said. “Executing over 90 simulations helped us understand what it feels like to navigate this new building through a patient family’s eyes. We are transitioning existing and new clinics and services each week within the Dodson footprint. This is a steady change and staff is working diligently to be ready. Their involvement in the simulations was essential for success.” 

The unique features of Dodson will include highlights such as a state-of-the-art parking garage with an advanced guidance system and many upgrades; Peaks Tech Zone where patients and families will learn how to use new medical equipment and sync their Cook Children’s apps; the Dodson Pharmacy for families to pick up prescriptions and staff members to purchase over the counter medications; an outpatient lab conveniently located on the first floor; Jane and John Justin Institute for Mind Health at Cook Children’s Medical Center – Fort Worth involving nine brain-related specialties on one floor and a Complex Care Clinic. Companion care restrooms are also available in the common areas on every floor. It doesn’t stop there. Extra space has been allocated for future programs.

“Our desire is that patients don’t have to go elsewhere to get care,” Davis said. “We are already planning for future growth.”

Not Just Another Building

For Seals who has three kids of his own, making the hospital experience an enjoyable one has always been top of mind.

“How the kids and families feel permeates everything we do,” Seals said. “I hope they see the fun in all of it and feel that the care is second to none. World-class care starts with world-class spaces and it’s my job to connect those by giving our employees the right type of space and tools to do what they do best.”

All of the child-friendly features throughout the building help kids to engage and decrease stress and anxiety. Spencer said as kids are more comfortable, parents feel that way too and it creates a better healing environment.

Stephanie Tunell couldn’t agree more. Two of her children are patients at Cook Children’s and her youngest who was born with Hypoplastic Left Heart Syndrome and a variant of DiGeorge Syndrome visits 10 different clinics.

“The new building is so bright and whimsical,” Tunell said. “I know children will be excited to experience the castle atmosphere and find all of the hidden gems as they journey through the building.”

“The new space is a reflection of our Promise – everything for the child,” Davis said. “It’s not about another building; it’s about being there for the children.”

A Champion for Children

The Dodson Specialty Clinics Expansion would not be possible without Clarabele “Pit” Dodson and her late husband T.L. Dodson Jr. whose generous gift built the original Dodson building. Pit learned the art of giving from her parents, who instilled in her the importance of taking care of others from an early age. 

A 1989 tour of Cook Children’s ignited the couple’s passion for the health care system. Together they began pouring their time, love and generosity into the organization. 

“When you think about the generosity of Pit Dodson, you have to think about all the kids she’s helped up to this point but also the generations of kids in the future,” Stan Davis said. “Yes, Pit has given us so much through her generous donations, but just as importantly Pit has given us her time and her heart. She’s a part of Cook Children’s that will last forever.”

RELATED: How One Woman's Generosity to Cook Children's Has Shaped Health Care for North Texas

**Content warning – this episode contains difficult subject matter. We advise you to listen with caution, knowing topics of child suicide, trauma, grief and mass shootings are discussed.

Suzy DeYoung didn’t plan on devoting her life to the subject of trauma, however, an accident involving her child led her down a path of exploring some of the most difficult subjects imaginable. For over a decade, she has studied and educated others as a trauma-informed parent. She was also one of the founding members of Sandy Hook Promise, which began after the horrific school shooting in her hometown of Newtown, CT. Most recently, she has conducted research on behalf of author Andrew Solomon, Ph.D., where she has interviewed dozens of families and experts impacted by child suicide. This discussion is enlightening, challenging and important, though it may be triggering for some.

We also want to hear from you. Please take our brief survey to let us know how we’re doing and what topic you want to hear discussed on Raising Joy.

Raising Joy is part of Cook Children’s Health Care System’s Joy Campaign, a communications initiative aimed at preventing youth suicides. For more information about the Joy Campaign, visit cookchildrens.org/joy.

New episodes of the Raising Joy podcast will be available each Tuesday. It is currently available on all major streaming platforms including Apple, Spotify and Google Podcasts.

Greyson’s diagnostic odyssey began just five days after he was born when his pediatrician sent him to the Cook Children’s Emergency Department.

“We were admitted into the NICU, where Greyson spent the next six weeks,” said Sarah Pathipphanith, Greyson’s mother. “There we discovered he had a host of problems including low muscle tone, apnea and dysphagia. We met many of our current doctors during that stay.”

Every rare disease has unique characteristics, but they sometimes share similar symptoms. This is where genetic testing comes in handy.

“PURA Syndrome can be characterized as a neurodevelopmental condition where individuals who are affected typically have global developmental delays, intellectual disabilities and difficulties with expressive language,” said Candace Gamble, M.D., medical director of the Cook Children’s Genetics Center. “The hard part in the beginning is that these symptoms are present with many other genetic conditions, so we used a type of genetic testing called whole exome sequencing to identify genetic variations and rule out other diagnoses to discover the super rare.”

Once the genetics team uncovered Greyson’s diagnosis, they guided his family through the results and connected them with other families in the community who have children with similar diagnoses. Now, he regularly sees a variety of Cook Children’s specialists: genetics, neurology, pulmonology, orthopedics and the Child Study Center.

“We felt very relieved to have answers and a framework for Greyson’s future treatments,” Pathipphanith said.

Despite his diagnosis, Greyson knows happiness and humor. His mother says he lights up every room with his sweet smile, big eyes and contagious chuckle.

“He loves to clap and play instruments when listening to music,” Pathipphanith said. “He likes to go on walks with his gait trainer and is very determined to explore his world!”

Dr. Gamble says Greyson will write the story of what PURA syndrome means for him.

“We’ll adjust to his needs,” Dr. Gamble said. “What makes us unique at Cook Children’s is that we serve as an advocate as we follow each patient along their health care journey. We can’t cure their genetic condition, but we work to make their lives better.”

Story by Jean Yaeger. Video by Tom Riehm.

When she was an elementary school student, LaQuatre Rhodes, D.O. had a passion for science projects and a big goal: to become a doctor.

“Your experience at the pediatrician's office is one that either excites you as a kid or makes you nervous,” said Dr. Rhodes, pediatric gastroenterologist. “I would be excited because I knew I was probably going to get a little treat, and I liked all the things that were happening there.”

That same enthusiasm carries over these days in her practice at Cook Children’s Specialty Clinics in Prosper. As she treats children and teens who have GI issues - diseases and disorders of the digestive system – Dr. Rhodes provides medical expertise and an example for aspiring physicians. She often notices a special look of recognition and wonders on the faces of her Black patients when they meet her in the exam room. Feeling at ease, those patients will approach her in very close contact.

“It’s just the exposure. It’s a joy and humbling to know that seeing someone who looks like you makes you feel more comfortable,” she said. “Some of them will let me know that they want to be a doctor. Seeing me definitely helps to put that in reality for them.”

According to the Association of American Medical Colleges (AAMC), about 5% of physicians in the United States identify as Black or African American, like Dr. Rhodes. That proportion could increase as medical school demographics shift. The AAMC reports that 11.3% of students entering med school in 2021-2022 cited Black or African American race or ethnicity, up from 9.5% the previous year.

As we celebrate Black History Month in February, Cook Children’s wants to salute Dr. Rhodes and everyone who brings diverse representation and voices of advocacy to health care.

“You can be the face of change you want to see by going into a field where you’re a minority,” said Dr. Rhodes, who never encountered a Black pediatrician growing up in Shreveport, La. “Having a seat at the table and more diversity is what changes the field and allows people to see things from a different lens.”

Path to her Goal

Science was Dr. Rhodes’ favorite subject, stemming early on from her participation in science fair competitions. One of her projects measured the effects of antacids (Rolaids, Tums etc.) on indigestion; as a fourth-grader, she already showed a preference for GI topics. Dr. Rhodes took Advanced Placement courses in high school. But academics wasn’t her only love … ballet, student council and sports also kept her busy.

Dr. Rhodes gives credit to her mother for modeling the core values of perseverance and hard work. Even though her mother was 18 when Dr. Rhodes was born, she was determined to achieve higher education. She was the first in the family to graduate from college and obtain a master’s degree.

“I was raised by a single mother who always instilled in me to reach for the stars, to be bold, be brave, and dare to be different,” Dr. Rhodes said. “Everything I learned, everything that has driven me to be very independent and focused, has come from her.”

She also volunteered at a free health care clinic where she saw the need for greater access to care. Her aspiration grew even stronger when she saw several slightly older Black acquaintances from her hometown enter medical school.

She earned a bachelor’s degree in biology from Baylor University and a master’s in biology from Louisiana Tech University. A summer program allowed her to shadow physicians, go to an anatomy lab, and preview other facets of medical careers.

But the MCAT tripped her up. Dr. Rhodes took the medical college admission test three times before scoring high enough to submit an application. She cites the MCAT as her biggest hurdle. “Once I got in, I was able to soar” at Ohio University Heritage College of Osteopathic Medicine, where she earned her medical degree.

While on a clinical rotation at the Cleveland Clinic, Dr. Rhodes crossed paths with a pediatric resident named Anthony Anani, M.D. Fast forward several years, and Dr. Anani was medical director for Clinical Services at Cook Children’s Medical Center reaching out to Dr. Rhodes about job openings in Prosper. Dr. Rhodes joined Cook Children’s in August 2022 as Dr. Anani’s colleague in pediatric gastroenterology.

Helping Sick Kids Get Better

Dr. Rhodes enjoys working with adults as well as children. But she decided to focus on pediatrics because of the resilience of children.

“Children are just pure joy,” she said, “and when they're sick, you want to make them well. And when they're doing well, it's a rewarding, humbling feeling.”

Her love for the human digestive system developed in part from research on the livers of rats that were fed various diets. The structure and function of the GI tract key parts – including the esophagus, stomach, intestines, liver and pancreas – fascinate Dr. Rhodes.  As she puts it: “All roads end up leading to GI.”

Reflux and constipation are common concerns for the patients she sees. More complicated cases include inflammatory bowel disease, chronic liver disease, and unexplained vomiting/nausea and bleeding. Dr. Rhodes provides biopsies, endoscopies, colonoscopies and other services.

Finding Inspiration

Dr. Rhodes points to Dr. Rebecca Crumpler as a health care pioneer for her achievement in 1864 as the first Black female physician in the United States. Dr. Rhodes predicts the physician workforce will continue to become more diverse. Cognizant of the opportunity to influence future doctors, she makes herself available to young people seeking reassurance about medical school.

One of Dr. Rhodes’ favorite quotes embodies her philosophy of pursuing your goal even in the midst of challenges: "Every dream begins with a dreamer. Always remember, you have within you the strength, patience, and the passion to reach for the stars to change the world." – Harriet Tubman

“That quote just really inspires and motivates you to want to be great and to dream big. It gives you the inspiration that it's possible, and to embrace things that come along the way.”

Three little girls’ lives were changed when Save a Smile provided more than $11,000 in dental care to restore their smiles. Britani, Skarli and Ashley Ortiz were in so much pain from dental decay that they frequently went to the nurse’s office at school to ask for ice packs. The Save a Smile program at their school identified the Ortiz sisters because each girl had multiple abscesses and was in emergent need of dental care.

Save a Smile, which started in 2003, is in 21 elementary schools in Hurst-Euless-Bedford, Fort Worth and Keller ISDs. Save a Smile provides dental screenings at schools and identifies children who are in emergent need or pain. Save a Smile has provided over $10 million in dentistry to children in the community.

Depending on the severity of the problem, the age of the child, translation requirements and financial/insurance status, a referral is made to the appropriate volunteer dental provider. Dental care is given in the volunteer dentists' private offices, free of charge to the families. Children with CHIP or Medicaid are connected with a Medicaid/CHIP provider selected through their coverage.

The Ortiz sisters were identified as patients in the 2019-2020 school year, but some of their dental procedures were delayed due to the pandemic. After more than 15 appointments and procedures, the girls received their final appointments in June 2022. They are 5, 6, and 7 years old.

“I told my sister to be brave and to not be scared,” Ashley Ortiz, 6, said. “They are very nice people. I was happy to be in this place because they’re so nice.”

Tonya K. Fuqua, D.D.S., is the Director of Child Oral Health under the Center for Children’s Health, Children’s Oral Health Coalition and Save a Smile program. She was also the dentist who volunteered to provide dental care for the girls.

Dr. Fuqua knew the girls were afraid of going to the dentist since they had never been before. She noticed how brave they became by the last appointment.

“I got to see the transformation from dental disease to happy smiles, so I think that warms all of our hearts when we think of it that way,” Dr. Fuqua said. “When we think how the smile connects to the rest of the body, it does impact the child, from not being able to eat or to learn or to not be in pain.”

The Ortiz sisters were some of many children across the country who got behind on dental appointments and care due to the pandemic and dental office closures.

“These teeth that were just going to need fillings or stainless steel crowns now needed extractions,” Dr. Fuqua said. “Even one of the girls needed multiple extractions. That’s sad and that’s where COVID has taken us.”

The 2021-2022 school year was one of the first years that Save a Smile had well over 500 kids identified as a “class one, severe or urgent” category for needing dental care. Dr. Fuqua said that so many children have infections and abscesses. Usually, in previous years, there were 300 to 400 children considered class one.

Save a Smile has more than 86 volunteer dentists who provide children with comprehensive treatment as needed, whether it’s fillings, surgery, root canals, orthodontics, etc.

“We can’t do it without these private-practicing dentists saying yes, to opening up their doors to seeing hundreds of children for thousands of dental appointments and a ton of dental work being done,” Dr. Fuqua said. “We want to keep kids out of our emergency rooms at Cook Children’s and out of our Urgent Cares if we can – not for dental pain.”

Save a Smile community health workers will pick up students and take them to appointments if they don’t have transportation.

Jesusa Campos, Community Health Worker at Save a Smile, connects with families in need and met the three girls.

The girls’ parents were unable to attend the appointments, so Campos was there to coordinate between the parents and the dental offices. Sometimes within one week, Campos picked the girls up from school and drove them to multiple appointments.

She’s happy that the girls are doing better now and that they learned how to take care of their teeth.

“I love being able to help them to strive in life,” Campos said. “I can’t imagine having a toothache and having to go to school every day. I like helping them out and making sure they can continue healthy habits.”

We are so grateful for the kindness, smiles, and love our patients and their families share with us every day, especially today. We hope your day is filled with lots of love, joy, and sweet treats! 

By Ashley Pagenkopf, MS, CCLS, Child Life Specialist at Cook Children's

Every shift in the Emergency Room, I enter rooms of patients and families that have never graced the doors of a hospital, and within a few minutes of meeting them, we will be starting an IV, drawing blood and swabbing their nose and throat most likely. They will have already met upwards of 10 new people. Sometimes, within 10 minutes, I have prepared them for surgery.

I have less than five minutes to build rapport, establish trust and prepare them for this moment, but they are arguably the most critical five minutes for the patient’s emotional safety. Many people have never heard of Child Life before entering the hospital, and many leave without fully understanding what child life can provide. The Association of Child Life Professionals (ACLP) states that our mission is as follows:

We, as child life professionals, strive to reduce the negative impact of stressful or traumatic life events and situations that affect the development, health and well-being of infants, children, youth and families. We embrace the value of play as a healing modality as we work to enhance the optimal growth and development of infants, children and youth through assessment, intervention, prevention, advocacy, and education. 

Child Life exists within the hospital environment to combat the unavoidable stress that accompanies children and families from the moment they enter our doors.  We work alongside the doctors and nurses to build rapport and establish trust with the patients and families.

Medical care is a part of all our lives. However, many adults do not seek adequate medical care due to traumatic experiences as a child. If we can normalize the hospital environment and make it feel more comfortable, then we are able to meet the needs of children while also providing them with the care they need.

The emotional safety of children and families is our top priority, and we help children and families cope with stress. The ACLP defines emotional safety as “an intentional, interdisciplinary practice to promote resiliency, healing and trust for pediatric patients and their families during medical experiences.”

Assessing the patient

First, a Child Life Specialist will assess the patient. We establish how a child relates to and experiences the world. We create a plan to help them cope with their health care experience. Every child is different, and every age group responds differently.

We learn what is helpful for them, what they enjoy, what they fear and how they will respond. We are also assessing the same things in their caregivers and their siblings.

Babies need comfort and the assurance of security. Toddlers and preschoolers need some control as well as comfort. School-age children often need all the information and the opportunity to ask questions. Pre-teens and teens need and desire autonomy and independence.

Preparing for a treatment or procedure

Child Life Specialists prepare patients and families for what they are going to experience. Children respond to their senses, and we know from research that children can respond better when they know what they will see, feel, hear, taste and smell in advance.

The most important part of preparing children is the use of developmentally appropriate language. Child life specialists prepare patients for all procedures including taking their blood pressure (arm hug), inserting an IV (medicine straw), going to surgery, getting stitches (string band-aids), and much more.

When children know what to expect, they can more effectively respond to what they are feeling. Procedures take less time and are accomplished more effectively when a child understands what is happening before it is happening to them.

Supporting patients and families

Next, child life specialists support patients and families through procedures and experiences. Child Life can assist parents and caregivers in comfort positioning. We can also help patients utilize deep breathing and other techniques.

Often, patients cope beautifully with distraction. Typically, distraction works most effective after a child has been prepared and established trust with the medical team. This is where you will see a child life specialist utilize an iPad or other distraction tool.

Child life specialists also support patients and families through traumatic experiences by utilizing debriefing techniques and emotionally supporting patients and families with new diagnoses. We also support patients and their families through trauma, death, and dying experiences.

Child life specialists are educated in grief and bereavement and support families with legacy items and on-going grief support following trauma and tragedy.

Education

Child life specialists also educate patients and families on new diagnoses and other new information.

I often tell kids that we are paid to tell the truth. We believe that children cope better and are more successful with hard procedures by understanding what is happening and why. One moment we educate children about why an IV is the best way to help their bodies, and the next moment we explain what cancer is and how it affects their bodies.

Play

Often the best thing that we can do within a stressful environment is to bring a little bit of normal to the mix. For children, their normal is play. By incorporating play in every aspect of what we are doing at the hospital, we can communicate with the patients more effectively and allow the hospital environment to become much less threatening.

This looks like toys in every area from the ER to the clinics to the inpatient floors. We also provide medical play where children can be in control of the medical procedure and process through their own experiences.

This also looks like decorating rooms and celebrating events even in the hospital from birthdays to holidays to Easter egg hunts. I would argue that our patients and families have some of the most fun of their lives within our walls and this is one of the best parts of being a child life specialist.

Child Life has a unique role and goal within the health care team. Our job is to bridge a gap between very scary health care experiences and children. We want kids to walk away very proud of themselves even after a hard day. They can sit still. They can take deep breaths. They can do the hard one more time, one more day.

We want children to see that they have what it takes to get through hard things, and it’s our job to call it out and help them utilize their internal strengths. Child Life Specialists are available throughout the Cook Children’s system. It is our pleasure to support your children

, a Twisted X Global Brands company, have joined together to create the Cook Children’s by Twisted X Collection. Twisted X will donate 100 percent of wholesale proceeds from every pair of shoes sold from this collection directly to Cook Children’s.  

“The partnership between Cook Children’s and Twisted X furthers our commitment to providing patients and families with a one-of-a-kind resource tailored around their health care needs to enhance the overall experience,” said Cook Children's Health Foundation Senior Vice President and Chief Development Officer Grant Harris. “We are constantly looking for new ways to provide compassionate care and we are proud to come together with Twisted X who shares this passion and embraces creativity as a therapeutic outlet.” 

From factory to retailer, the entire supply chain has come together in support of the collection to deliver the footwear at a reduced cost to maximize the donation. The collection includes four unique designs made by patients at Cook Children’s with the help of Twisted X Designer, Tuan Lee. Each pair is named after the artist and embodies their dream pair of footwear to achieve a perfect balance of style and comfort in the form of a slip-on kick.  

• The Alex: Alex is a 6-year-old with Ketotic Hypoglycemia. She loves math, enjoys riding her bike and uses her imagination to go on adventures as colorful as her bright shoe design.  
• The Rowan: Rowan is a 9-year-old with Sigmoid Sinus Vein Thrombosis. She loves riding horses and is a member of 4H, which is highlighted by the western vibes of her cactus green design.  
• The Brianna: Brianna is a 14-year-old with Epidermolysis Bullosa. She has painted several canvases displayed inside Cook Children’s Media Center and especially loves to paint butterflies, which are prominently featured in her sky-blue design.  
• The Isaac: Isaac is a 15-year-old with Spina Bifida. He enjoys art, video games and Marvel movies, using Iron Man as the inspiration behind his sleek silver design. 

"Twisted X is dedicated to making a positive impact on the community we serve, and Cook Children’s is a perfect partner for us,” said Twisted X CEO Prasad Reddy. “We know that little steps can make a big impact and our hope is to raise awareness within the western industry for the amazing care provided at Cook Children’s in order to give back to those who need it most. This collection is a true embodiment of comfort that gives back and brings so much joy to footwear design.”  

"I like my shoe and my favorite part about it is that it’s rainbow colored and I love rainbows. And I love this shoe the best because I painted it and I got to make it however I want,” said Alex. “Art helps me relax and calm down my nerves from the pain that I get from my skin condition. I usually paint butterflies because it represents my illness. It’s like butterfly skin because it’s fragile,” said Brianna.  

Cook Children’s and Twisted X will celebrate the collection with a launch event today at Cook Children’s Fort Worth Campus. The collection is now available online at twistedx.com/pages/cook-childrens and in-store at select retailers nationwide. To learn more about the collection and the shoe’s young designers, visit cookchildrens.org/twistedx.    

Written by Ashley Antle. 

All babies are special, but 16-week-old twin sisters JamieLynn Rae and AmieLynn Rose Finley are making history in one of the most unique ways possible. On Monday, they became the first conjoined twins ever to be separated at Cook Children’s Medical Center in an 11-hour procedure months in the making.

Conjoined twins are estimated to occur in only 1-in-200,000 live births. JamieLynn and AmieLynn are omphalopagus twins, meaning they are joined at the abdomen and share one or more internal organs. In their case, it’s a liver.

“As far as conjoined twins that reach and stay viable after birth, at least for the first few days, there's really only about five to eight of those per year on the entire planet, so it is very rare,” said Jose Iglesias, M.D., Cook Children’s medical director of pediatric surgery.

Even so, the girls’ story begins like many others.

James Finley and Amanda Arciniega of Saginaw, Texas, wanted to add one more baby to their family of five. The youngest of their three children at the time, 7-year-old James, was elated at the prospect. He’s always wanted a younger sibling and playmate.

Little did any of them know — or expect —their hope for one more would become a gift of two.

“She said that's the baby's head,” Finley said, describing how their obstetrician shared the unexpected news of twins at their 10-week ultrasound. “I was like, ‘What is that?’ and she said, ‘That's the other baby's head.’ And I was like, ‘What?’”

Double Blessing

The revelation of the twins' connection came early in the pregnancy. The 10-week ultrasound showed the babies had little to no separation between them. Images taken at the following appointment confirmed the babies were conjoined. Suddenly, the family’s excitement for welcoming two new additions was covered by a cloud of questions, uncertainty and fear. 

“I would not have thought in a million years that I would have twins,” Arciniega said. “And then conjoined twins on top of that.”

In the months that followed Arciniega enjoyed an easy and uncomplicated pregnancy, save for the many appointments with specialists across the state to determine who best to deliver the twins and what hospital was most capable to care for them after birth.

The couple settled on maternal-fetal specialist Bannie Tabor, M.D., whose practice is located at Texas Health Harris Methodist Hospital Fort Worth in Fort Worth, Texas. He is also the medical director for Cook Children’s Fetal Center. In his 32-year career of caring for high-risk pregnancies, Dr. Tabor has delivered more than 5,000 babies.

Soon after taking Arciniega and her unborn babies as patients, Dr. Tabor reached out to Dr. Iglesias, a longtime colleague, to review the case and discuss the possibility of separation.

“It was a big surprise when I got the first phone call from Dr. Tabor saying he had conjoined twins that he was starting to follow,” Dr. Iglesias said. “At that time they really didn't know the babies’ anatomy specifically. So I said there is a big range of possibilities and we need to see what happened with the initial MRI to make some plans from there.”

Many conjoined twins die in utero or do not survive long after birth because of the nature of their joining and the organs they share. But scans showed JamieLynn and AmieLynn each had their own heart and heart sac, increasing their chance of survival and making them candidates for future separation.

“I think the key thing when we first met the family was they had a lot of anxiety about the situation, what the options were and what they could do,” Dr. Tabor said. “I think I gave them the confidence that, while I could not promise everything would work out, we would do everything that we could and, with everybody involved — from me to the neonatologists to the surgeons — they were in the right place.”

Family Ties

Texas Health Harris Methodist Hospital Fort Worth and Cook Children’s Medical Center have a long history of physical and professional collaboration. Both facilities are located in the heart of Fort Worth’s Medical District along a historical stretch of Pennsylvania Avenue that cattle barons once called home. The two facilities are joined by a skywalk and, in Cook Children’s early days, even shared some utilities. Local neonatologists practice at both hospitals’ neonatal intensive care units (NICUs) and many Texas Health Fort Worth obstetricians, including Dr. Tabor, regularly consult with Cook Children’s pediatric specialists.

“The working relationship between the whole team, that's made possible by the close relationship of the hospitals, allows us to be the center that can provide this type of highly advanced service to North Texas so families don’t have to go halfway across the state or halfway across the country or even to Dallas for care,” Dr. Tabor said.

Early in the pregnancy, Finley and Arciniega also consulted Ben Gbulie, M.D., F.A.C.S, of Posh Plastic and Reconstructive Surgery in Mansfield, Texas, and a member of the plastic surgery faculty at Cook Children’s. They learned of Dr. Gbulie through Finley's mother, whose friend told her of a local plastic surgeon with experience in multiple conjoined twin separation surgeries.

After long discussions with the couple, he pointed them toward Cook Children’s Medical Center.

“I explained to them that traveling for surgery is not a problem, and a lot of people do that,” Dr. Gbulie said. “But if you can get the same quality of care where you live, it's always better because you want to be able to have long-term follow-up. While this is a major, complex operation, it is not something that is beyond what I felt Cook Children’s could do.”

Finley and Arciniega were relieved to hear Dr. Gbulie’s recommendation. The family lives less than 30 minutes from Cook Children’s. To know that they could stay close to home, close to their other children and close to their support system was comforting.

Cook Children’s was also familiar. Two of the couple’s older children have received care at the medical center. Their daughter, Aaliyah, 13, spent weeks in Cook Children’s pediatric intensive care unit (PICU) when she was 7 for a nearly deadly bacterial infection called Bartonella henselae. It’s commonly known as cat scratch fever and can be acquired when scratched by a cat. Big brother, James, is a frequent visitor to Cook Children’s as he manages sickle cell disease. 

“Sometimes we come in here and I’m like, ‘Hey, I’ve seen you before,’ to a doctor that has been around our son or Aaliyah, and they’re like, ‘Hey, I’ve noticed you, too,’” Arciniega said. “So it’s kind of like we’re family here.”

“Everybody’s always treated us nice,” Finley added. “It takes a lot of pressure and anxiety off when you know your kid is going to be taken care of.”

Delivery Day

As the babies grew in utero, Dr. Tabor closely monitored their progress and, together with a team of doctors from both hospitals, prepared a delivery and post-natal game plan. During Arciniega’s third trimester, Dr. Tabor became concerned with the slow growth rate of the babies and determined it was best to deliver them early.

On Oct. 3, 2022, at 34 weeks gestation, JamieLynn and AmieLynn were delivered via C-section at 10:40 a.m. at Texas Health Fort Worth. Arciniega required a vertical incision over the traditional horizontal approach to delivering the babies safely. Both weighed 4 pounds, 7.8 ounces. JamieLynn was the longer of the two, measuring 16.9 inches to AmieLynn’s 16.5 inches.

“It wasn’t an easy delivery, but we made it look easy,” Dr. Tabor said reflecting on that day.

Upon delivery, neonatologists Chad Barber, M.D. and Mary Frances Lynch, M.D., took over the babies’ care in Texas Health Fort Worth’s NICU. Like with any set of identical twins, telling them apart can be tricky and, if mistaken, dangerous in the hospital setting. To help keep their identities straight, Dr. Barber and Dr. Lynch chose a favored color for each girl, purple for JamieLynn and green for AmieLynn, and used Sharpies to mark each baby’s color on one of their nails.

After a month, the girls were transferred to the NICU at Cook Children’s Medical Center where they remain today, still under the care of Dr. Barber and Dr. Lynch who practice at both Texas Health Fort Worth and Cook Children’s. The girls’ color codes followed them there, too, and are used as an additional layer of safety when identifying the babies for medication administration, feedings and individual care needs. They even inspired the purple and green crayon costumes the girls sported for Halloween.

Home Away From Home

In the NICU room, which has been their babies’ home since November 2022, Finley and Arciniega attend to their infants like many other parents of twins — together. It takes two to pick them up, especially considering how they must navigate the tubes and wires that monitor the babies’ vitals and deliver nutritional support. Scripted signs handmade by the NICU nurses hang on the wall, making their private NICU room look a little more like a sweetly appointed home nursery.

The girls lay face-to-face on their sides, carefully and frequently repositioned from one end of their shared crib to the other in order to give equal time on each side. Although currently the smaller of the two, JamieLynn is wide-eyed and alert. Her gaze fixes on and follows those that enter the room. She’s feisty and makes sure everyone knows when she is unhappy. Sister, AmieLynn, is more reserved. She’s often the calmer and more chill of the two.

Together, the beloved girls evoke the attention of their parents who make sure there are enough cuddles and kisses to go around, especially from their protective dad. He’s already planning ahead for the days when young men come calling for any one of his three daughters.

“Every window will have a rose bush underneath,” Finley said with a laugh, but only half kidding.

Their days in the NICU are filled with feedings, naps, diaper changes, baths and a number of therapies to help with mobility, strength and eating. The girls respond especially well to music therapy and love it when Grandma sings to them during her visits. Their siblings, brother Isaiah, 15, Aaliyah and James, visit regularly, too. James loves to entertain them, and the girls respond with delight.

Their face-to-face positioning makes feedings and diaper changes a challenge, but nurses have developed creative workarounds to accomplish both. Most of the time they can be bottle-fed one at a time by a single caregiver, with AmieLynn often waiting patiently until sister is satisfied. When patience runs out, feeding is a two-person job.

The older they get, the more they move their limbs. It’s not uncommon for one to unintentionally punch and sometimes anger the other. The girls wear mittens to protect each other from scratches.

All the while doctors monitor their progress, study their anatomy and plan for the enormous task of separation. 

Journey to Separation

The timing of conjoined twin division varies from case to case and primarily depends on how complicated the anatomy is. In the girls’ case, their anatomy and growth support a surgery date sooner rather than later.

While the girls are thriving in the NICU, they are not growing at the same rate, partly because they share some blood supply.

“One is stealing groceries from the other, basically,” Dr. Barber said.

AmieLynn is beginning to develop scoliosis. Feedings are becoming more and more challenging with their size, mobility and face-to-face proximity. While separate, their hearts are exceedingly close together and grow ever closer as the girls age.

“They're pretty much at their maximal, I like to say, baby stretchability,” Dr. Iglesias said. “So their skin is pretty stretchy. Their abdominal walls are stretchy. We've got the benefits of using that. By separating early, they're not going to be as used to the loss of having essentially part of you that is different, so hopefully, that transition will be better. There are not very many more benefits to waiting longer versus doing it now.” 

At nearly 4-months-old, the time is right.

It’s taken months of planning and collaboration. Countless hours have been spent building a comprehensive medical team, studying scans of the girls, building models of their anatomy, mapping out potential surgical solutions, identifying the what-ifs, troubleshooting potential problems, inventorying equipment needed to accomplish the surgery, preparing the operating room (OR) and rehearsing the carefully choreographed surgical production. Dr. Barber estimates there have been at least 100 medical professionals, from physicians to nurses to therapists and other clinical specialists, intimately involved in the girls’ care and surgical planning.

“I think the teamwork is a great point to bring up because it's everything,” Dr. Iglesias said. “It takes a huge team to get all of this working as smoothly as you can make it, given the unknowns that we'll have. Having everybody open and honest talking to each other regardless of their position, that's the definition of teamwork.”

The surgery comes with great risk and a number of unknowns. Because they must dissect the liver, an extremely vascular organ, bleeding is a concern. A significant risk of infection also exists, for which the twins will be monitored weeks into recovery. Doctors are unsure of how the babies’ hearts will respond to their new anatomic position as the girls lay on their backs for the first time in their lives. Then there are questions about how to best close the abdominal wall, many of which can not be fully answered until separation is accomplished. The girls may require additional surgeries to complete closure and reconstruction.

“In order to prepare for this, it's a lot of practice, practice, practice and more practice, trying to really think of every possible scenario so that we're not surprised by anything,” Dr. Barber said. “There's always going to be unexpected things, but if you're prepared for the worst possibilities and the most unlikely outcomes, then you can hopefully not get too caught off guard.”

For their part, mom and dad pray, leaning on the same faith in God that carried them through when their older children faced medical crises.

Separation Day

Monday, Jan. 23, 2023. JamieLynn and AmieLynn are ready for their big day. Thanks to their NICU nurse, they’re sporting fresh mani-pedis in their signature purple and green to help identify them in the OR.

Before the sun rises, family and members of the medical team gather in the girls’ NICU room. It’s calm and quiet as mom and dad steal a few final pre-surgery kisses from their babies. Grandma sings softly. Others pray. The girls are awake, content and comfortable. Just before 7:30 a.m., they begin their journey to the OR.

Inside the OR is a sea of medical professionals: three anesthesiologists, four pediatric surgeons, two plastic surgeons and about a dozen other clinical professionals. They are separated into two teams, one for each girl. Those in purple scrub hats belong to JamieLynn’s squad, while Team AmieLynn dons the green. Everyone will work together until the babies are separated, then each team will focus solely on their assigned baby.

“The reason that's important is because you need focus,” Dr. Gbulie said. “You want to minimize room for errors and the risk of confusion. So little things like color-coding everyone and everything minimizes the risk of giving the wrong medication on either side. It's truly a community effort that involves a multi-specialty team.”

The first few hours involve inserting central lines for delivering anesthesia and placing breathing tubes. Then, sedation begins. The process is slow and methodical.

“When we're talking about taking care of conjoined twins compared to taking care of just a single baby, one of the biggest questions is what is shared, and there does seem to be some shared circulation between the girls,” said Chandra Reynolds, M.D., the lead Cook Children’s anesthesiologist on the surgical team. “What is the response going to be for baby B when we give baby A certain medication? It’s a very slow and stepwise approach until we better understand what happens to one when the other receives medication. The key thing is to give one baby a certain amount of medication, watch and wait for a while to see how things are going and, based on that response, we can give her sister a certain amount as well.”

Once the girls are safely asleep, the surgeons begin marking incision lines. At 12:28 p.m., the separation officially begins. Guided by plastic surgeons, they are careful to make cuts that give the girls’ abdomens the best chance of closure.

First, surgeons open the abdominal wall and dissect the lower part of the sternum and the liver. A little under two hours in, the family receives word that the girls’ shared liver is separated. The private waiting area where the family anxiously awaits news of progress erupts with cheers. Finley and Arciniega embrace.

Surgeons painstakingly work layer-by-intricate-layer until they reach the backside of the abdominal wall where they complete the dissection.

The update everyone’s been waiting for comes at 3 p.m. JamieLynn and AmieLynn are officially separated and on their backs. Tears and shouts of praise flow from family and friends in the room. Their relief is palpable.

“I want to tell you that all of the people in there taking care of them cheered even louder than this,” said the nurse delivering the news, followed by laughter from the family.

There is still a long way to go.

“Once the babies are finally physically separated, then we have to initially look for other additional anomalies and see if there is anything else going on,” Dr. Iglesias said. “We transfer one baby to the other bed where one surgeon will follow and an additional surgeon will pick up with the other and continue to do the evaluation.”

Once each baby is ready for closure, their assigned pediatric surgeons, Dr. Iglesias for JamieLynn and Marty Knott, D.O, for AmieLynn, begin closing the chest and abdomen. Plastic surgeons Dr. Gbulie and Eric Hubli, M.D., Cook Children’s Surgeon in Chief and medical director of craniofacial and cleft surgery, assist with skin closure.

By 6 p.m., the surgery is complete. This time Dr. Iglesias, Dr. Gbulie and Dr. Knott deliver the news to the family.

“We did it,” Finley said in response. “I don’t know what I did, but we did it.”

To this Dr. Iglesias replies, “You trusted us. That’s what you did.”

All the while, neonatologists Dr. Barber and Dr. Lynch stand by for the girls’ post-surgery return to the NICU.

One by one, the sisters exit the OR on their way back to their familiar home away from home in the NICU. For the first time in their lives, they lay on their backs, each in their own crib. The family gets a momentary glimpse from afar as the girls are wheeled past the waiting room, and cheer them on as they pass. About an hour later, mom and dad are able to join the girls in the NICU.

The first look at their twins in separate beds brings a wave of emotion. For the first time, they must divide their attention between the two. They start with JamieLynn. Arciniega places her pinky finger in her baby’s hand.

“It’s OK, Mommy’s here,” she whispers.

Then to AmieLynn. Finley gushes about her strength and how proud he is of his quiet fighter.

It’s a monumental moment, but none of the physicians are ready to say “mission accomplished.”

“The challenges the girls may face after surgery are very difficult to fully prepare for,” Dr. Lynch explained. “We do still have some unknowns as far as how their shared vasculature and their shared anatomy and positioning over these last three months will affect them. As Dr. Barber alluded to earlier, we have to prepare for many different scenarios. The things that will worry us and that we’ll be the most focused on in the first few days are going to be breathing support and pain control. As you can imagine, this is an incredibly big surgery and pain control will be at the top of our list.” 

They’ll be watching for signs of infection, too.

“The soft tissue usually swells over the first two to three days,” Dr. Gbulie said. “If you get through those two to three days, you're usually OK. That being said, we are going to be going through potentially some bowel and definitely the liver, so there is a relatively higher risk of wound infection and that usually shows up at about five to 10 days.”

Road to Recovery

Recovery is best described as slow.

“I'm sure mom and dad are going to think we're moving in slow motion,” Dr. Iglesias said. “The first steps are going to be healing of the very large incision that is required to separate them. We have to wait for their gut to start to work before we start allowing nutrition to move through their intestines. Some of these things may require staged procedures so the family's ready that the abdominal closure may take more than one operation. We're hopeful it won’t, but that's a possibility.”

They’ll need extensive rehabilitation, too, which will include nutritionists, physical therapists, occupational therapists, speech therapists and more.

Doctors say they’re optimistic but will continue to hold their collective breath until they are waving goodbye to the girls as they leave Cook Children’s for their first ride home.

“I'm very hopeful that they're going to have a good recovery and lead healthy lives in the future,” Dr. Iglesias said. “They're going to have a bit of a ramp up from the recovery, but I think they're going to be able to get there eventually, and very close to normal if not completely normal.”

Until that chapter of this story begins, JamieLynn’s sassy spirit and AmieLynn’s sweet smile remain on full display as their NICU team continues to care for their daily medical, physical and emotional needs. This time, together, but separate.

Cook Children’s is a not-for-profit organization. Donations to Cook Children’s Health Foundation allow us to care for our families when and how they need us. Give today to support patient families like Jamie and Amie. Go here. To donate items at the Medical Center for Jamie and Amie, email AandJ@cookchildrens.org.

At the event on Thursday, patients participated in arts and crafts themed around the “You Can Be Anything” Barbies that showcase different occupations and show that children can grow up to be anything they'd like to be.

After hearing about the tragedy, Mattel contacted Varghese Summersett Injury Law Group, which is representing Athena’s mother, Maitlyn Gandy.

Maitlyn and her legal team helped a six-person group from Mattel set up Barbies and toys for the patient event. Afterward, Maitlyn interacted with the patients as they came down to select a toy, have a snack, and complete crafts that focused on the children’s future and goals. 

“This was a special event in memory of my daughter,” Maitlyn said. “I’m grateful for everyone who helped make it happen.”

Nancy Molenda, Executive Director of the Mattel Children’s Foundation, said their purpose is to empower the next generation to explore the wonder of childhood and “reach their full potential.” 

“We are honored to be part of this event and to help bring the power of play to the patients of Cook Children’s,” she said.

We would love to hear from our listeners. This short 1 to 2 minute survey is anonymous and intended to help guide Cook Children's Joy Campaign and the podcast.

Go here to complete this short survey.

The Raising Joy podcast is part of the Joy Campaign, which launched in April 2021 as a suicide prevention communication initiative, and aims to reach parents through honest conversations about the mental wellbeing of children and teens.

The Raising Joy podcast is currently available on all major streaming platforms including Apple, Spotify and Google Podcasts.

As cases of the flu and RSV decline at Cook Children’s, we are experiencing an increase in positive cases of COVID-19. Families are encouraged to remain vigilant against respiratory illnesses and make sure their children have the latest COVID booster vaccines, especially as a new dominant subvariant appears to be more contagious.

From Dec. 25 to Dec. 31, Cook Children’s saw a COVID positivity rate of 9.2%, which has been increasing since November. From Jan. 1 to Jan. 7, the positivity rate increased to 11.2%.

As children return to school from the holiday break, there could be an increase in respiratory viruses and illnesses over the next two weeks and beyond, so it’s important to remain watchful and proactive. If your child is feeling sick, keep them at home from daycare or school and wear a face mask when in public to stop the spread.

Influenza A and B cases have declined since November. From Jan. 1 to Jan. 7, we had a positivity rate of 9.9% for Influenza A. This doesn’t mean that the flu season is over, it’s possible to see another increase in cases, so be sure to get vaccinated against the flu. The flu vaccine works to prevent you from catching the flu – or, reduce the severity if you do come down with the illness.

“It is very encouraging to see cases decline,” said Laura Romano, D.O., hospitalist at Cook Children’s. “However, this does not mean that RSV and flu season is over. There is a very likely possibility of a second peak occurring later this winter.”

Respiratory syncytial virus (RSV) cases are declining compared to high cases in October and November. We currently have a RSV positivity rate of 7%. There are limited treatments for RSV. Right now, there is no vaccine available to prevent RSV. Synagis, a monoclonal antibody, can be given to prevent severe infections but this is reserved for premature infants, etc. We are also seeing positive cases of rhinovirus and adenovirus in our patients.

COVID-19 Subvariant

The World Health Organization said that it’s concerned with how quickly the XBB.1.5 subvariant of COVID is spreading in the northeast U.S. The subvariant makes up 40% of submitted specimens to the national SARS-CoV-2 surveillance system. There's still a lot that is unknown about this subvariant.

“This subvariant may be able to slip past our immune defenses and might be more contagious, but it is not clear yet if it causes more severe disease or if the vaccine can effectively prevent severe infections from this strain,” said Mary Suzanne Whitworth, M.D., medical director of infectious diseases at Cook Children’s. “We do know that masking and good handwashing will still be helpful to avoid infection.”

The Centers for Disease Control and Prevention tracks the community spread of COVID-19. For the week of Jan. 1, Tarrant County is rated “high” transmission spread.

Prevention & Precautions

The biggest thing the community can do to help is to take precautions against COVID-19, including masking indoors if you or your child feel sick, frequent hand washing, and getting the COVID-19 vaccine and booster.

Get updated flu and COVID vaccines – these will help prevent infection and reduce the risk of hospitalization. You can call your pediatrician to schedule an appointment to receive vaccinations.

• Teach your children to cough or sneeze into their elbow.
• Use hand sanitizer.
• If you or your child is sick, wear a mask in public.
• If your child is sick, keep them home from daycare or school. Make sure your child drinks lots of liquids, gets plenty of sleep and takes over-the-counter meds to alleviate symptoms.

Flu vaccines help prevent infection and can prevent serious outcomes in people who are vaccinated but still get sick with the flu. The vaccines also reduce the risk of hospitalization.

There’s no guaranteed way to avoid the flu. But getting the vaccine every year can help. At Cook Children’s, we believe that flu vaccinations are the safest, easiest way to protect everyone age 6 months and older from serious flu symptoms. And a flu vaccination during pregnancy helps protect your newborn baby from flu for several months after birth.

Flu immunizations, COVID-19 immunizations and other services are available at Cook Children’s neighborhood clinics and primary care sites across Fort Worth and beyond. Find a location near you: Primary Care Offices/Neighborhood Clinics (cookchildrens.org)

For COVID, at-home tests and community testing locations are also great options.

at 8 a.m. on Monday, Jan. 9. Our team members in Prosper have already served patients in the community under Cook Children’s signature blue peaks.

Larger than life-size digital displays, storybook murals, walking paths that invite exploration and play, and spaces bathed in every color of the rainbow — it’s what childhood daydreams and imaginations are made of. These are also a few of the moments of magic kids and their families will feel, see and experience when they walk through the doors of the new Cook Children’s Medical Center – Prosper.

Ten-month-old Faylinn Harris was the first patient at Prosper. Her mother, Tionne Harris, said she was relieved to have the medical center so close to where they live.

“It makes me feel 10 times better about everything, especially considering it's right down the street, so this is just great," Tionne said. “The people who took care of her did a really great job and they were really nice.”

The 23-acre Cook Children’s campus in Prosper is the culmination of a multi-year expansion project into the rapidly growing northern region of the state. Cook Children’s began developing the health care landscape in the area in 2019 with the opening of an urgent care center and several area primary care offices, followed by a medical office building and outpatient surgery center in 2020.

Cook Children’s Medical Center – Prosper is the next step in supporting those services and serving families in Prosper and the surrounding communities. It brings world-class medical care from Fort Worth closer to the homes of children living in the northern sector of the Metroplex. We are honored to be able to offer families the care they’ve come to expect and trust from Cook Children’s but in a location closer to their neighborhoods where they have the support structure of family, friends and community.

We are so excited about the opening of the new medical center and want to thank everyone for their hard work in making today a reality.

Go here to view the open positions we're excited to fill in Prosper.

RELATED STORIES: The Cook Children's Story: A New Chapter Unfolds in Prosper

Cook Children’s Unveils New Medical Center in Prosper, Blending Technology with Moments of Magic 

Texas Country artist Josh Abbott visited patients and staff members at Cook Children’s Medical Center on Jan. 6 to share his music and to bring some smiles.

While at the children’s hospital, Abbott talked about his partnership with the Texas Dairy Queen Operators’ Council. In June 2022, Abbott was chosen to create a fresh new sound for DQ® restaurants in Texas with one of the most recognizable jingles in the Lone Star State, “That’s What I like About Texas.”

“I loved visiting Cook Children’s to meet the kids and the team caring for these incredible human beings,” Abbott said. “It was great to sing, laugh, and learn about the Life Zones where the kids can forget about why they are in the hospital for a moment. It also was fun to be interviewed for Cook Children’s internal television station, CLZ TV.”

Abbott is the voice for Texas Dairy Queen. Dairy Queen is a Children’s Miracle Network Hospitals  partner and many locations throughout our Fort Worth and surrounding areas participate and do national fundraising initiatives through CMN Hospitals (Miracle Treat Day, Point of Sale fundraising, Dip It for the Kids). 100% of the funds raised to through these initiatives in our fundraising market benefit Cook Children’s.

Abbott sang the iconic jingle as well as several of his songs for the kids and team. He talked about his music journey, the band and his family, which includes his wife Taylor, daughter Emery and son Luck.

“I love what I do, and I get to entertain people because I have a very supportive family,” Abbott said. “This visit was a wonderful opportunity to share music which can be therapeutic and healing.”

Before his departure, Abbott handed out Dairy Queen Dilly Bars for the kids and staff.

The Josh Abbott Band will play at Billy Bob’s in Fort Worth on Jan. 6 & 7.

Media partners may use this content for news stories and broadcasts with credit to Cook Children's.

1.     Baby Formula Recall: Here's What Parents Need to Know:

Starting in February, a nationwide recall affected the supply of infant formula. Parents and caregivers were searching for information to help during the shortage.

2.     Right Time, Right Place: Long-Lost Brother and Sister Brought Together at Cook Children’s

In August, we shared the heartwarming story of Cook Children’s very own Raymond Turner and how a Christmas present of a DNA kit led him to a sister who he never knew he had. His half-sister, Christina Sadberry, has been bringing her son to Cook Children’s for seven years. Go here to watch the reunion video.

3.     Does My Baby Need His Tongue-Tie Cut?

Dr. Diane received questions from parents about cutting their baby’s tongue ties, the thin band of skin underneath your tongue. She wrote this article after discussing the procedure with many different experts, including a dentist, lactation consultant, speech language pathologist, and an ear-nose-throat physician.

4.     Asking for Some Grace: Cook Children’s Emergency Department, Urgent Care Centers Overwhelmed

Cook Children’s Emergency Department and Urgent Care Centers were overwhelmed with patients starting with the back-to-school season.

5.     Accidental Ingestion of Marijuana in Babies and Toddlers More Than Doubled in 2021

The number of babies and toddlers who screened positive for marijuana in the Emergency Department (ED) at Cook Children’s more than doubled in 2021 from the previous year.

6.     Ongoing Issue: Cook Children’s Desperately Asking for Community’s Help

Cook Children’s continued to be overwhelmed with patients concerned with COVID-19 and upper respiratory infections, like colds.

7.     Cook Children’s Unveil New Medical Center in Prosper, Blending Technology with Moments of Magic

For the first time in 100 years, Cook Children’s cut the ribbon and debuted a new Medical Center. The state-of-the-art facility was built with everything for the child in mind, including what they'll see and experience as they make their way through the facility. Go here to look inside the new hospital.

8.     Emotional Reunion: Suicide-Attempt Survivor Returns to Cook Children’s to Thank Medical Team

Payton Singh survived a suicide attempt when she was 12 years old. In August, she reunited with members of the medical team at Cook Children’s who helped her on her journey back to health.

9.     Does My Child Have Allergies, COVID, a Cold or the Flu?

A runny nose and cough could point to a few things. We broke down how parents might get a better idea of what their child is suffering from.

10.  Uvalde School Shooting: Cook Children’s Doctors, Experts Share How Parents can Discuss Tragedy, Support Their Children

In the wake of the Uvalde school shooting, our doctors and pediatricians gathered to discuss how parents can help their children after a tragedy.

By Ashley Pagenkopf, MS, CCLS, Child Life Specialist at Cook Children's

The last few years have been filled with collective challenges. The pandemic seemed to touch every single person in some way. It was the first experience of my lifetime that seemed to affect every single person I know.

We seem to be coming out of the grief and fog, but some lasting changes and effects will forever remind us of this time. Yet, in the middle of a pandemic, life continued to happen. Babies were born. Family members received new diagnoses. Some of us said goodbye to those closest to us. Joy and sadness shared space just like they always have and always will. 

When 2022 began, I filled out my yearly “dream guide” and walked into this year with joy and excitement to leave the intensity of the past two years behind. I wanted a break from the hard and literal constant changes. For our family, this year was a mile-marker year. My husband and I celebrated 15 years of marriage, and I entered my fourth decade of life. I was ready – ready to celebrate at every turn and really enjoy this year.

Grief and Grace

At the end of March, our world changed yet again. My middle daughter had a seizure and was diagnosed with a brain tumor. Time stood very, very still. Only a week after her first seizure, my grandfather (who I truly believed would live forever), died unexpectedly. We found out about her tumor two days before my grandfather’s funeral. 

I’ve never really known grief like I knew that weekend. It was physically painful. I remember wondering if the pain would ever subside or if it was going to be my new normal. There were many moments I could not breathe. My girls were devastated over the death of their great-grandfather, and we still had to tell them about a tumor. I just thought that pandemic was hard. This was a new level.

For the next several months, my daughter endured tests and imaging, and we talked to countless doctors to decide our next steps. We spent the summer in many, many consults and trying to make huge decisions.

At the beginning of August on our way to our summer vacation, I found myself completely void of any hope. I was shutting down. The moment I realized I was not okay was in the security line at the airport with the unkindest person that ever existed. 

After several very difficult shifts in the ER where many families lost their precious babies coupled with the intense decisions we were making for my daughter, the one lady working security caused me to completely fall apart. I wondered if she had recently lost someone or watched someone else grieve their child or if her child had a new diagnosis… I had to ask myself this so maybe I could give her some grace. I really had nothing left, though. 

I sobbed as I put my shoes on. My kids stared as I didn’t even try to hold it together. My husband was angrier than ever. I made my way to Starbucks, barely able to catch my breath and not even attempting to hide my hot, alligator tears. Once on the airplane, I proceeded to sit on my coffee that I had set down to put a bag away. Things felt completely hopeless. Life felt unraveled.

Have you looked at this past year and wished it would just end? Have you had one too many phone calls from the school with your kid as the subject? Has your kiddo been diagnosed with a new illness? Did you think that you were done with treatment, only to find yourself back in hard? Has your job felt like it is robbing you of all your energy and sanity? Have you lost someone dear to you this year? Has your world felt like it was ending, and you couldn’t see a way to stop it? Have you had a moment like mine in the airport where you had nothing left for the mean person and then you sat on your coffee?

Embrace Hope Now

I’ve heard a lot of people say recently that they are ready to have 2022 in their rearview mirror. I would be lying if I said I didn’t feel the same way. But I’ve spent a lot of time thinking about this. I am the first to embrace new beginnings. I love the New Year – new goals, new resolutions, new starts. But I have been reminded often that hope is here, now. It is at this very moment. In my desperate desire to leave this year behind and start over, I may miss the very moment where hope meets me now.

Literally, in every hard moment of this year, something beautiful has shared space with it. That something beautiful has often reminded me that hope is here. Hope is defined as “confident expectation” or “forward-looking faith.” Hope reminds us that there is good coming and beauty to be had.

Yet, this year, what I’ve always hoped for has met me in every hard moment. The hope for people who would support me, the hope for strength to shine in my kids in the face of adversity, the hope that I would be able to be present for my family when we faced pain and the hope that I could still find comfort and peace amid grief… All those hopes have been real this year. Thank goodness for those few sips of Starbucks before I sat on it. (Starbucks has provided a great deal of hope in the middle of hard this year.)

While on the said vacation, a wonderful photographer captured our family on the beach of Lake Tahoe. Hope that we could still smile and laugh and find joy met me in those moments. When tears streamed down people’s faces as they shared their prayers and hopes for our family, hope met me there. When my Cook Children’s family extravagantly showered our family with gifts and love, hope was tangible. When my very best friends drove seven hours for my daughter’s surgery and surprised me, hope met me. With every letter and encouragement and tear, I met hope.

What would happen if we could embrace hope now? Hope – the beauty that is to be had – doesn’t have to be next year. Hope is here, now. 

You can be hope to someone, and you can find hope in the simple. You can hand that bag of essentials out the window to the next man or woman you see on the corner and offer them hope. You can pay for the car behind you in the drive-thru and be hope for them. You can smile and ask your cashier how their day is and be hope for them at that moment. 

You can offer the beauty that is to be had – the hope – to those around you. And you can find hope in your next cup of coffee that warms you up. You can see hope in your kiddo that chooses kindness towards their sibling. You can experience hope in the next phone call or text message or next hug that comes your way. You can experience hope the next time your kiddo is brave like you never knew. You can see hope in the way that one tiny candle lights up the darkest room. Hope is here, now.

You will have a hard time finding someone better suited than Parker Vickers to help children choose and build a cuddly friend at the Build-A-Bear Workshop at Cook Children’s Medical Center. Funny, charismatic, kind and big-hearted are a few of the words people use to describe the 18-year-old.

Vickers is a trailblazer, too. As the first to participate in a Cook Children’s Medical Center pilot internship program designed to employ students from the Child Study Center at Cook Children’s Jane Justin School, he’s paving the way for his current and future classmates to join the ranks of the medical center’s workforce.

Vickers is in his fourth year as a student at the Jane Justin Upper School where children with developmental and intellectual challenges are educated using individualized lessons designed to meet each child’s unique learning needs. Teaching life skills necessary for students to achieve productive and meaningful lives is a big part of the curriculum.

“Our mission is to impart skills so that our students can transition successfully into the next learning environment,” said Kimberly James-Kelly, M.S., M.S. Ed., LBA-TX, assistant principal, Jane Justin Upper School. “So we want to create lifelong learners, and that is the case for students transitioning on to more traditional educational settings or for students transitioning on to the workplace setting or to post-secondary education. Really, we just want to help our students achieve the goals they have for themselves and support them in achieving the goals that their family has for them as well.”

The internship offers students a real-life work setting to practice and hone the skills they’ve learned while attending the Jane Justin School—skills like listening to and following instructions, customer service, adjusting to changes in the work environment, accepting feedback from a manager and working independently. A job coach from the Jane Justin School joins the intern during their hours, usually four hours per week, to guide, advise and offer support while on the job.

Just like their in-school instruction, the internship is aligned with the student’s unique strengths, interests and hobbies. Vickers is particularly fond of stuffed animals and plushies, making him the perfect fit for a post in the Build-A-Bear Workshop.

“We work with the administrators of the Child Study Center and they identify a high-potential student,” explained Tracy Vang, Cook Children’s ID&E director. “Once they identify the student, we look at their strengths and try to match them to the opportunities that we have available. It's very important that we don't pick and choose where the student goes because we have bias that leads us to put people where we think they belong. That's not our goal or our intent here. We want to match students to where they feel they belong.”

Vickers started his three-month internship in September as a front-of-the-store greeter. He progressed to helping guests choose their bear and, as a testament to his initiative, now holds the coveted role of bear stuffer.

“If you know anything about Build-A-Bear, you know that stuffing gets everywhere,” said Kimberly Johnson, Build-A-Bear Workshop manager at Cook Children’s. “Parker was quick to get brooms and sweep up the stuffing. When he noticed that the bear inventory out front was low, he went and grabbed bears from the back to stock in the store. I was so amazed and proud that he took that initiative upon himself. So the next step was to teach Parker how to stuff and, if you've been in here, you know the big machine and loud noises are a little ominous. But he took to it like a champ.”

Vickers has been so successful at his job that, over the Thanksgiving holiday, he worked without the oversight of his job coach. It was a proud moment for James-Kelly and his Jane Justin School family.

“He has worked so hard to learn what it means to be an employee at Build-A-Bear and at Cook Children's,” James-Kelly said. “He attended the onboarding training for all new hires. He pays close and careful attention to instructions in the workplace. He asks questions and acquires the skills pretty quickly. He practices them on his own. He takes pride in his work. So when the opportunity arose for him to work independent of our support, we looked at data and we talked with the staff at Build-A-Bear, and we all thought it was time. We’re incredibly proud of him.”

The program is as much a win for the medical center as it is for Vickers and his peers, Vang says.

“I would say the biggest benefit to the hospital is in the spirit of diversity and bringing everyone with different backgrounds together,” she said. “We have kids that have developmental disabilities and challenges and, when they see someone who looks and learns like them, they are able to connect with that person for a more meaningful experience. That really helps us improve our business goals by creating a patient experience marked by our core values of respect, kindness, collaboration, safety, generosity and imagination.”

Speaking of imagination, Vickers has it in spades.

“I’ve got lots of ideas in my head,” he said.

Those ideas are on full display when he performs the Build-A-Bear Heart Ceremony where children make a wish and promise to care for their bear. The ceremony is led by Bear Builders who tailor the dedication to each child’s interests, hopes, dreams and circumstances.

Once the pilot is complete, program leaders are exploring other opportunities for Jane Justin School students to receive real-world training at Cook Children’s. Potential work experiences include the cafeteria, transportation department, dietary aid and environmental services, to name a few. The hope is that Cook Children’s will be able to offer students employment once they complete their internship and that they become members of Cook Children’s work family. Vickers feels “very good” about blazing that trail for those that come behind him.

“I’m the first one,” he said proudly. “If this turns out to be a success, then everyone else would be able to have a chance to do this.”

With Christmas around the corner, parents are scrambling to find the perfect gifts for their kids. December is National Safe Toys and Gifts Month, and many of the toys sold in stores and online pose significant dangers to kids of all ages including water beads recently highlighted in the news. Once swallowed, the beads may swell inside the intestine creating a potentially life-threatening blockage.

“Unfortunately the water beads are not always visible on an X-ray, and typically we have to monitor closely to see if any concerning symptoms begin to appear such as vomiting, abdominal pain or distension,” said Bianka Soria-Olmos, D.O., pediatrician and Medical Advisor for Digital Health at Cook Children’s.

Last year, more than 200,000 toy-related injuries were treated in U.S. hospital emergency departments with 74% of those sustained by children 14 years old or younger. Forty-six percent of the injuries were to the head and face – the most commonly affected areas of the body. 

Sharon Evans, trauma injury prevention coordinator at Cook Children’s, says that looking at the recommended age displayed on the toy packaging is often overlooked and more important than people realize.

“The age is set on the research of what is appropriate for mental and physical development and safety,” Evans said. “It doesn’t mean your child is not smart or mature.”

Evans says one of the gifts she would definitely say no to are the Airsoft or Nerf guns – and anything that shoots objects – because the hospital sees a lot of eye injuries from those.

Use these safe toy guidelines when shopping for your children:

• Avoid buying toys with sharp points or other dangerous edges.
• Do not buy toys with small magnets or button batteries which can cause serious injury or death if ingested.
• Buy toys that will withstand impact and not break easily.
• Look for “ASTM” on the label. This means the product meets the national safety standards set by the American Society for Testing and Materials.
• Always include protective gear with sports equipment.
• Do not buy toys with long strings or cords as these can become wrapped around a child’s neck.
• Do not give toys with small parts to young children. If the object fits inside a toilet paper roll or if pieces from the toy could break off and fit into the roll, it is not appropriate for kids younger than 3.
• Always dispose of uninflated or broken balloons immediately. According to the Consumer Product Safety Commission, more children have suffocated from them than any other type of toy.
• Do not buy crayons or markers unless they are labeled nontoxic.

Video by Tom Riehm. Photos by Lauren Graham and Eline Wiggins.

Wind chills are expected to be below zero degrees on Thursday, according to the National Weather Service. Be sure to dress warmly, cover up any exposed skin and limit your time outdoors. Hypothermia begins when our body temperature drops two to four degrees. 

By Thursday night, low temperatures will fall into the single digits across most of the Dallas-Fort Worth region. By Friday morning, temps will be in the teens or possibly in the single digits with high wind gusts.

People exposed to extreme cold are susceptible to frostbite in a matter of minutes. Areas most prone to frostbite are uncovered skin and the extremities, such as hands and feet.

Take these tips from MedStar on what a winter weather plan should include:

• Make sure that you have important phone numbers, including for your health care providers, pharmacy, and veterinarian.
• Assure you have enough medication for several days on hand.
• If you rely on medical devices in your home, have a backup plan in case you lose power for an extended period of time, such as a backup generator or battery pack and backup oxygen bottles.
• Have a communication plan for your family.
• Know how to get reliable information during the storm.
• Gather supplies in case you need to stay home for several days without power.

Carbon Monoxide

If the power does go out, be very cautious of carbon monoxide.

During the Texas winter storm in February 2021, Cook Children’s treated 13 patients for carbon monoxide poisoning in one night. Sam Selby, D.O., worked the overnight shift in the emergency department on Feb. 15, 2021 and saw families use propane or diesel-burning engines that are meant for outside use with adequate ventilation.

Dr. Selby described how families used generators inside or too close to their homes or garages to keep warm. Generators emit fumes and can cause carbon monoxide poisoning.

“Carbon monoxide poisoning prevents your blood from being able to bind to or carry oxygen. You suffocate while you are still breathing,” Dr. Selby explained. 

Here are some additional ways to keep your family safe during this time:

• Don’t use anything such as a BBQ grill or propane tank to heat your home.
• Don’t run a vehicle inside of a garage attached to your home.
• Don’t heat your home with a gas oven or stovetop.
• Don’t burn charcoal inside of your home. 
• Do seek medical attention if you suspect carbon monoxide poisoning.
• Do ensure the carbon monoxide detectors in your home are properly functioning and installed in areas that will wake you if it alarms.
• Do check for local resources, such as warming shelters, to keep your family safe. 

Coats & Car Seats

Don’t strap your children into their car seats with their heavy coats on. In a crash, padding from a coat or thick layers will flatten out, leaving room under the car seat harness. This increases the risk of a child slipping through the straps and being thrown from the car seat. Instead, dress your child in thin layers. Once buckled up, slip the coat on backward with the sleeves on the child’s arms. This way, the coat acts as a blanket and doesn’t affect the fit of the harness.

Pack an emergency bag for your car. It’s a good idea to have blankets, warm clothing, hats, and gloves available in case you become stuck in winter weather. You’ll also want to have nonperishable snacks packed away.

Dressing Warmly

When Outside

• Make sure newborns are dressed appropriately. "A good rule of thumb is to dress newborns in as many layers as you're wearing," said Diane Arnaout, M.D., Cook Children’s Medical Advisor for Digital Health. "That includes covering their heads, hands and feet. Those areas can lose a lot of heat and be harder to keep warm."
• For the most warmth, dress your little ones in wool instead of cotton. Essential winter items include hats and gloves, as well as sweatshirts or T-shirts that can be layered under overcoats or jackets.
• Blue skin, shivering and a cool chest and stomach are signs that children may be dangerously cold. If you see these signs, take action immediately to get kids out of the cold. Seek immediate medical attention if you're not able to warm the body.

Recognizing Hypothermia

According to the Centers for Disease Control and Prevention (CDC), hypothermia, or abnormally low body temperature, "is a dangerous condition that can occur when a person is exposed to extremely cold temperatures." To learn more about the warning signs of hypothermia, click on this site from the Centers for Disease Control and Prevention (CDC).

Warning signs for adults include:

• Shivering, exhaustion
• Confusion, fumbling hands
• Memory loss, slurred speech drowsiness

Infants:

• Bright red, cold skin
• Very low energy

Victims of hypothermia can include babies sleeping in cold rooms.

Want to know more about winter weather safety? 

Check out these articles from Checkup Newsroom contributors:

• Cold Weather and Kids. How to Keep Your Family Safe at Home, Outside and in the Car. 
• Bracing for Freezing Weather: Plan Ahead to Protect Your Family on the Road
•  Common Winter Mistakes Parents Make
• Cook Children’s Sees Spike in Carbon Monoxide Poisoning Patients During Freezing Temperatures

Media partners may use this content for news stories and broadcasts with credit to Cook Children's.

Thanksgiving is only a couple of days away: turkey, casseroles, mashed potatoes and more! It’s also GERD Awareness Week to raise awareness of the complications of gastroesophageal reflex and to know the symptoms to look out for as you gather around the table. LaQuatre Rhodes, D.O, Gastroenterologist at Cook Children's Specialty Clinics in Prosper, breaks down what parents need to know or look out for when it comes to this common disorder.

What is GERD?

Gastroesophageal reflux is the passage of gastric/food contents into the esophagus with or without regurgitation or vomiting. It is defined as gastroesophageal reflux disease when reflux leads to troublesome symptoms or complications. A muscular valve is at the end of the esophagus to help prevent backflow of food/gastric contents, but when it doesn’t close well, it results in irritation of the esophagus and reflux symptoms. Symptoms of reflux vary by age.

What are the symptoms?

Infant/Toddler reflux symptoms:

•  Crying
• Fussiness
• Back arching
• Regurgitation
• Vomiting
• Dry cough
• Feeding difficulties
• Poor weight gain
• Breathing difficulties (wheezing, pneumonia, stridor, apnea)
• Recurrent ear infections

Older children reflux symptoms:

• Heartburn
• Abdominal pain
• Regurgitation
• Vomiting
• Acidic or sour taste
• Sore throat
•  Hoarseness
• Dry cough
• Difficulty swallowing
• Choking

Gastroesophageal reflux may be seen more in children with certain medical conditions including neurologic impairments, prematurity, and pulmonary problems (ex. cystic fibrosis, asthma, laryngomalacia).

What are the “red flag” symptoms?

Other conditions which can mimic reflux require further evaluation especially in the setting of red flag symptoms. Some of those conditions include infections, pyloric stenosis, brain tumor, meningitis, hydrocephalus, increased intracranial pressure, metabolic disorders, inflammatory bowel disease, obstruction, anatomical abnormalities, and decreased gut motility.

Red Flag Symptoms suggesting a disorder other than gastroesophageal reflux:

• Weight loss
• Lethargy
• Fever
• Irritable, severe crying, or inconsolable
• Seizures
• Bulging fontanelles in infants
• Increased head circumference in infants
• Small head circumference in infants
• Recurrent forceful or projectile vomiting
• Vomiting blood
• Vomiting bile
• Vomiting overnight
• Rectal bleeding
• Bloody stools
• Abdominal distention
• Breathing problems (difficulty breathing, stops breathing, turns blue, wheezing, frequent choking, recurrent pneumonia episodes)

How do you treat GERD?

Reflux can be concerning as a parent, but in the absence of “red flag symptoms” and if the child is gaining weight well, there's no need to worry. Symptoms should improve with time, lifestyle modifications, diet modifications, and/or acid suppression. If at any point your child develops worrisome or alarming symptoms please have evaluated by primary care physician, gastroenterologist if established care, or local emergency department.

If there are no red flag symptoms present, initial management of GERD is conservative:

Lifestyle modifications

• Staying upright at least 30 minutes after meals
• Burping infants during feeds
• Avoid tobacco smoke exposure
• Avoid tight diapers or elastic waistbands
• Weight loss if child overweight or obese
• Elevate head of bed 30 degrees

Diet modifications

• Thickening feeds with cereal or thickeners
• Formula change to hydrolyzed or amino acid based formula
• Avoid overfeeding
• More frequent smaller meals
• Avoid eating at least 2-3 hours before bedtime in older children
• Avoid large meals before exercise or increased activity
• Avoid acidic foods (ex. pickles, red sauces, citrus) spicy foods, carbonated drinks (ex. sodas, seltzer beverages), high fat foods, chocolate, and caffeine

Trial acid suppression for 4-8 weeks which may be extended longer based on clinical response and/or physician assessment.

• Proton Pump Inhibitors (ex. omeprazole, pantoprazole, lansoprazole, esomeprazole)
• Anti-histamine (ex. Famotadine, Cimetidine, Ranitidine, Nizatidine)

If alarming or worsening symptoms despite initial management, physician may proceed to gastroenterology referral and/or further evaluation including:

• Esophagogastroduodenoscopy (EGD)
• pH probe
• Abdominal ultrasound
• Barium studies (ex.  Upper GI series, esophagram, swallow study)
• Motility studies
• Severe reflux resulting in complications must consider surgery referral for Nissen fundoplication if not responding to medications and no other disorder cause of severe vomiting.

The state-of-the-art facility was built with everything for the child in mind, including what they'll see and experience as they make their way through the facility. Spaces are bathed in every color of the rainbow. Storybook murals meant to capture and stoke the imaginations of children define many spaces.

In the main entrance, guests are welcomed by a Sistine Chapel-like painting of flying cows — a nod to Cook Children's Cowtown roots — a massive video wall and a tile motif of a tree whose color-coded falling leaves guide visitors to the emergency department in one direction and outpatient services in the other.

“This is an extraordinary time in our almost 105-year history in North Texas,” said Rick W. Merrill, President and CEO of Cook Children’s Health Care System. “Families in this fast-growing region can take comfort in knowing there’s no need to drive long distances to see board-certified pediatricians, specialists, intensivists, hospitalists, and emergency medical doctors. Their child’s medical needs can be met right here by our outstanding team in Prosper.”

Cook Children’s Medical Center – Prosper includes an emergency department, operating and procedure rooms, pediatric ICU, medical/surgical unit, outpatient infusion center, imaging services, retail pharmacy, laboratory services, and pharmacy services.

With thousands of families moving to this area of North Texas each month, the need for quality pediatric health care is evident. Cook Children’s has already served more than 260,000 children through its 17 primary-care clinics located in this booming region, which includes Prosper, Aubrey, Plano, McKinney, Allen, Denton, Celina, Frisco, Little Elm, Flower Mound, and Carrollton.

“Cook Children’s is more than a health care system. We strive to be an extension of your family, growing with your child from their first steps to adulthood,” said Kevin Greene, Vice President and Administrator at Cook Children’s Medical Center – Prosper. “When your child needs world-class pediatric care, we’re here – whether it’s primary, urgent or emergency care, or treatment for a chronic condition. You can trust our team to take care of you and your child’s every need.”

The ribbon-cutting ceremony for Cook Children’s Medical Center – Prosper coincides with a new look for the health care system. This month, Cook Children’s unveiled a new logo and a culture platform to reinforce its commitment to its patients and community. Patient families in the Prosper area can expect to experience the same culture of kindness, safety, and compassion they’ve come to know from Cook Children’s.

Cook Children’s has long been recognized as a leader in pediatric health. In fact, US News & World Report has ranked Cook Children’s among the best children’s hospitals in the United States every year for the past 15 years. In 2022, Cook Children’s earned recognition for cancer treatment, cardiology and heart surgery, diabetes and endocrinology, neurology and neurosurgery, orthopedics, and pulmonology.

Many of these medical specialties are currently available at Cook Children’s Prosper campus, which opened in 2019 with urgent care and primary care services. A medical office building was added in 2020 providing access to 14 specialties including:

• Cardiology
• Ear, Nose and Throat
• Endocrinology
• Gastroenterology
• Hematology and Oncology
• Nephrology
• Neurosurgery
• Psychology
• Sleep Medicine
• Urology
• Neurology
• Pediatric Surgery
• Pulmonology
• Sports Medicine

An ambulatory surgery center for outpatient procedures, outpatient lab, and retail pharmacy are also located in the medical office building. By the end of the year, 549 medical professionals and ancillary staff will work at the Prosper medical campus. 

“Cook Children’s is known nationally and internationally for its world class patient care, leading clinical research and medical advancements,” said Tony Anani, M.D., MPH, MBA, gastroenterologist and Medical Director of Clinical Specialties at Cook Children’s Medical Center – Prosper. “I’m proud to be part of this incredible organization that truly embodies the motto, “Everything for the child.”

Cook Children’s Medical Center – Prosper also showcases the best available medical technology including features directly related to patient satisfaction. For example, if a patient in the hospital needs to see a specialist at Cook Children’s Fort Worth campus, they can visit virtually through the in-room TV.

In addition, the MyCookChildrens app provides patient families access to wayfinding, information about their care team, and daily schedule, to name a few. Another perk of the Prosper campus is Peaks Tech Zone. Similar to Apple’s Genius Bar, Peaks Tech Zone provides families access to health technology advocates who can assist with setup and support for their child’s medical device and/or MyCookChildren’s account.

Cook Children’s Medical Center – Prosper marks the first hospital Cook Children’s has built outside of the flagship medical campus in Fort Worth.

Media partners: If you are interested in telling this story, please contact Public Relations Manager Kim Brown at Kim.Brown3@cookchildrens.org or at 682-885-1080, 817-266-3728

By Ashley Pagenkopf, MS, CCLS, Child Life Specialist at Cook Children's

I have a middle schooler in my home for the first time this year. I have spent a great deal of time over the last couple of months deciphering the BIG emotions that middle school inevitably brings. It can take some time to get to the real emotion, the real issue. But once we do, I am often reminded of how hard middle school is and that none of it makes sense. Still – all these years later – middle school is still dumb. The only thing left to do is to agree with my daughter about how dumb it really is. So that’s what I try to do – I try to validate her very big emotions…most of the time.

What is validation?

If you are wondering what validation is, that’s OK. We are all learning as we go. (This is an example of validation.) The dictionary defines validation as the “recognition or affirmation that a person or their feelings or opinions are valid or worthwhile.”

Validation plays a significant role in children feeling known and understood and creating an emotionally safe environment in the healthcare setting and at home. When a child can feel understood and heard, they have space to begin to cope with the emotion they are feeling. Without that space, it is very easy for any of us to get wrapped up in the emotion and not be able to find our coping skills. Once we can help children name their emotions more effectively and affirm that their emotion is valid, we will begin to see children regulate their own emotions more effectively. 

Often our children’s big emotions and feelings are met with our own big emotions or feelings, not validation. It is easy to be frustrated and overwhelmed by others’ emotions. As we explore emotional safety among our children, we have to recognize the importance of validation. Children cannot feel emotionally safe if we dismiss their emotions.

I work with children and families in an environment where emotions are always big – the emergency room. All areas of the hospital and doctor’s offices can produce big emotions in our kiddos. It may be helpful to hear what is *not* validating and does not promote emotional safety in the healthcare environment or at home.

1. Threatening is not validating. As parents, we love the “if you don’t _____, then ____” statements. One we often hear as child life specialists is “if you don’t stop crying, they will give you a shot.” This does not help anyone. Not only does this break trust with the health care professionals trying to help your child, but it also intensifies fear amid a child’s already high emotions. Health care professionals are there to help, and a shot may be necessary at some point. Shots are not punishment. We don’t want to punish children in any way for their emotions. Instead, we want to teach them how to cope with them.
2. Promising things is not validating. It is a basic rule in the health care environment not to make promises. Honestly as a parent, there is little that I can promise will or won’t happen. Statements like “If you just do this, then we will go home” does not validate your child’s emotions. This only establishes an expectation that no one in the room can promise. It is not wrong to want to promise these things to try to de-escalate your child, but this also can break trust and give children false hope when a promise cannot be met.
3. Disengaging or leaving is not validating. Often when our children are expressing intense emotions, it is super easy to check out – emotionally or physically. We don’t want to engage the emotions either out of embarrassment, fear of making it worse or we feel the same way and cannot control our own emotions. However, what we communicate to our kids when we disengage is that they are too much and that we can’t be there for them.

These are all responses that happen as we struggle to know what to do as parents. We are desiring to de-escalate the moment, and truthfully we just want to be on the other side of it.

Let’s explore how validation can not only de-escalate the moment, but it also gives our children language to their feelings. It creates a space between the emotion and the moment which allows them to regulate their own emotions more effectively.

• Let your presence be validating. The way you show up for your child matters. Practice being with them amid their emotions. This does not mean matching your child’s emotions. This means staying, listening, and hearing them. It means comforting them and engaging them in the midst of their big emotions. Even if you don’t understand what they are feeling, you can be there to recognize and affirm their emotions.
• Let your words be validating. You can use normalizing language like “It is OK to be scared, worried, etc…” or “Most kids feel anxious about…” or “I remember feeling nervous about…” When you can normalize how kids are feeling, it reminds them that they are not alone and that others have felt these feelings and still been able to keep going. I often remind kids that it is totally normal to feel afraid of an IV or needles. Most kids have some amount of fear of getting an IV or poke. This one statement of validation often changes the tone of a room. Also, let your language be reflective. You can reflect back to them what you are seeing and hearing. “I see that you are feeling nervous about this…” or “This is a lot of information to process. I bet you are feeling a little overwhelmed.” If your child is telling you their emotions, you can reflect back on what they are saying to you. “You are wishing that you could go home” or “You don’t want to do this again and you are totally over this.” Just the recognition of emotion allows room for emotional regulation and being able to put the emotion in its proper place.

Validation is not difficult, but as a parent and caregiver, it does take practice and intentionality. Often it does not come naturally. However, the more time that you spend practicing validating your child, you will find it easier and easier. Validating our kids can be hard, but you’ve got this! ;)

When children are struggling, they may not be able to fully articulate their emotions like teens or adults. This is where a trained play therapist, such as Lizzy Brown, can help.

Brown is a licensed professional counselor and registered play therapist at Cook Children’s. She explains how she uses the ‘universal language’ of children to help them process their emotions and work through unresolved trauma.

Raising Joy is part of Cook Children’s Health Care System’s Joy Campaign, a communications initiative aimed at preventing youth suicides. For more information about the Joy Campaign, visit cookchildrens.org/joy.

New episodes of the Raising Joy podcast will be available each Tuesday. It is currently available on all major streaming platforms including Apple, Spotify and Google Podcasts.

The sunny personalities and determination of Sophie Worsham and Libby Sponsler shine through as the girls and their families deal with the physical challenges and developmental delays of Down syndrome. 

Sophie, who is 15 months old, has low muscle tone due to Down syndrome and her premature birth. But she can play, babble, smile big and roll wherever she wants to go. Thanks to exercises and occupational therapy, Sophie is learning to sit up on her own. 

Libby, who is 2½ years old, uses lots of words but receives speech therapy to improve her pronunciation. Occupational therapy helped her to start walking just before her second birthday. Libby is a doting big sister who loves to dance, snuggle and express her sassy charm. 

Both girls had their diagnosis of Down syndrome confirmed through genetic testing at Cook Children’s. Both also underwent surgery as infants at Cook Children’s – Sophie for intestinal blockage and Libby for a heart defect. They come in for checkups as they grow and hit milestones.

October is Down Syndrome Awareness Month, and we at Cook Children’s want to share information about the condition, which happens very early in development when the embryo’s dividing cells have three copies of chromosome 21 instead of two. About 5,000 babies are born in the United States each year with Down syndrome, also called Trisomy 21. Characteristics vary but typically include distinctive facial features and some degree of developmental and cognitive delay.   

Cook Children’s geneticist Alexandra Garza Flores, M.D. said people with Down syndrome can have frequent ear infections and hearing loss, obstructive sleep apnea and thyroid dysfunction. Because of their low muscle tone, many babies with Down syndrome need extra support in feeding. Heart defects are common, occurring in 40-50% of newborns with Down syndrome and representing one of the most serious medical problems in early life.  

“With our current medical advances and proactive medical surveillance, people with Down syndrome have the potential for happy, healthy, productive and rewarding lives,” Dr. Garza Flores said. “Things will be challenging and different at times, but we will be with their family every step of the way to help keep their loved one healthy and to ensure that they have access to necessary resources.”  

Dr. Garza Flores outlined the scope of Down syndrome services at the Cook Children’s genetics center, which includes geneticists, genetic counselors, nurse practitioners, case managers, social workers, a dietitian, medical assistants and insurance specialists. 

The genetics team coordinates the diagnostic testing, screenings and consultations, and provides long-term follow-up care. Additionally, children ages 2 and up have the option of periodically attending a special multidisciplinary Down Syndrome Clinic, which is offered every other month. 

Down syndrome occurs in about 1 in every 700 births, she said. Doctors often recognize the signs through physical examination, but confirmation is recommended. “The gold standard is a karyotype analysis,” Dr. Garza Flores said, referring to the blood test that makes the extra copy of chromosome 21 visible.  

Children with Down syndrome share a common chromosomal abnormality. But each child is also unique. Celebrating their resilience and zest for life, we want to feature two perspectives. Let’s meet Libby and Sophie.

Libby’s story

Liberty Joy “Libby” Sponsler weighed 8 pounds, 12 ounces at birth. First-time parents Joshua and Madison Sponsler thought their daughter’s face possibly had features of Down syndrome - a surprise since they had not done a prenatal test. While the rates of Down syndrome babies run higher for moms over age 35, Madison was just 21 years old. The midwife at their birthing center recommended the Sponslers take Libby to the pediatrician the next day. 

The following morning, during the drive from their Bedford home to the doctor’s office, the bluish tinge in Libby’s hands spread to her whole body. They rushed to the Cook Children’s Emergency Department, where Libby received oxygen and was admitted to the Neonatal Intensive Care Unit (NICU) for a week of medical support and numerous tests. She indeed had Down syndrome, and also a hole in the heart called an atrioventricular canal defect. 

Cook Children’s cardiologist Gregory Barker, M.D. explained that the defect involves several heart structures, causing excessive blood flow to the lungs. 

“This results in symptoms such as trouble breathing and poor feeding,” Dr. Barker said. “If left unrepaired, it would lead to irreversible and severe damage to the lungs.”

At 6 months old, Libby returned to Cook Children’s for surgery to repair the walls between her heart chambers and to create separate tricuspid and mitral valves out of one large valve. It’s a complex procedure, Dr. Barker said. 

“The good news is that with appropriate surgical intervention, patients go from having essentially fatal heart disease to having a healthy cardiovascular system,” he said. “Most of our patients get to the point of requiring cardiology follow-up only every one to two years.” 

“We quickly saw a huge change,” Madison said of the surgery’s outcome. Libby no longer needed the medication that stabilized her oxygen level. Libby become more alert, ate better and began to gain weight. She visits Dr. Barker for checkups. 

Texas Early Childhood Intervention (ECI) provides speech therapy and occupational therapy to Libby at home. Occupational therapy helped her learn to crawl and walk. Her therapy these days focuses on the consistent management of stubborn behavior. 

“A lot of it is figuring out what works for Libby and what doesn’t work for Libby,” her mom said. 

Madison said she and Joshua first reacted with shock to the Down syndrome news. But they soon found other families who provided support and helped them adjust their expectations. The diagnosis was scary and overwhelming early on, Madison said, but not anymore.

“The community helped me process everything. Once I was able to process, I was able to enjoy my baby, and it went really well from there,” she said.

Madison acquired the mindset that Libby might not follow certain timelines that other children do. And that’s OK. Libby likes to hold her little sister Ember. She enjoys playdates and music. She demonstrates that people with Down syndrome are capable of reaching their goals, Madison said.

“If she’s trying to stack blocks and having a hard time with her fine motor skills, I tell her ‘You can accomplish it if you want to accomplish it.’”

Sophie’s story

Prenatal screening indicated Down syndrome about 12 weeks into Brooke Worsham’s second pregnancy. Brooke and her husband Mark were already parents of a healthy toddler. But this second pregnancy had more complications: A scan revealed that unborn Sophie had a digestive disorder called duodenal stenosis. At risk for stillbirth due to low flow between the umbilical artery and placenta, Brooke spent six weeks in the hospital under close monitoring. 

Sophie Elaine was born via C-section at 33 weeks, weighing 3 pounds, 8 ounces. The Worshams had pre-selected Cook Children’s as their destination for the surgery Sophie needed. Cook Children’s pediatric surgeon Thomas Rothenbach, M.D. operated when Sophie was just one day old, creating openings to bypass the obstruction in her small intestine. 

About 25% of babies with duodenal atresia (complete obstruction) or duodenal stenosis (partial obstruction) also have Down syndrome. The duodenum, or the first section of the small intestine, fails to develop into a hollow tube in babies born with the condition. 

“Because of this, nothing can pass from the stomach to the small intestine,” Dr. Rothenbach said. “The atresia has to be fixed for the baby to be able to eat.”

Sophie was also born with a hole in her heart that is now considered functionally closed without the need for intervention. Doctors can hear a slight murmur, but for now her heart is not a concern. 

For six weeks in the Cook Children’s NICU, nurses and speech therapists helped with Sophie’s feeding challenges. Then after discharge to her home in Fort Worth, therapists from ECI stepped in. The therapy has helped Sophie learn to eat pureed foods supplemented by infant formula.

Occupational therapy, meanwhile, puts Sophie in poses to improve her strength and endurance. Tools for therapy include pillow props and toys to attract Sophie’s attention while she practices. Brooke calls the therapy a workout. “If we put her in position, she can hold it, but she’s not able to independently sit right now.”

The Worshams are hoping that Sophie can enroll next August in the KinderFrogs intervention program at Texas Christian University, which serves children with Down syndrome and other developmental differences. She’s on the waitlist.

Brooke describes her daughter as social, easygoing and adored by big brother Graham. Sophie is enamored by the ABC Song and her favorite light-up owl, and she’s fierce in striving to accomplish whatever she puts her mind to. She recently started grabbing her bottle and spoon.  

“She’s going to do all the things, but just not in the rate that Graham did it. And so you just sit back and take it day to day and be patient. It’s going to take a little longer, and we don’t feel rushed.” 

Kids with Down syndrome have the same interests, desires and emotions as other children, she pointed out. They want to be included but might need more help or a longer time to finish a task.  

Like Libby’s mom, Sophie’s mom says the diagnosis was scary at first. Her advice? Find a group of other parents raising children with Down syndrome. Tap into their experience and support. Don’t look too far into the future. Be ready for the joy that Down syndrome children exude.   

“Everyone she meets loves Sophie. She fits right into our family. Since she was born, everything has worked out, and our life is not any more complicated than just adding another child.” 

​We are deeply saddened by the senseless violence that took the lives of two people at Methodist Dallas Medical Center this weekend. We pray for unity, peace and healing.

We stand with you Methodist Dallas.