Federal safety officials have recalled the Fisher-Price Snuga Swings and revised their standard for nursing pillows, two moves intended to guard infants against unsafe sleep spaces.

The U.S. Consumer Product Safety Commission (CPSC) and Fisher-Price announced the Snuga Swings recall in October 2024. The swings aren’t designed for sleep. According to the CPSC, the deaths of five babies were reported from 2012-2022 when the swings were being used for sleep. Bedding such as blankets had been added to the swing in most of those fatalities.   

In September 2024, the CPSC issued a new safety standard for nursing pillows to prevent sleeping infants from suffocation, entrapment and falls. The commission knows of 154 infant deaths and 64 injuries from 2010-2022 associated with nursing pillows.

“Your child should be sleeping on a flat, non-inclined mattress,” said Sharon Evans, Cook Children’s Trauma Injury Prevention Coordinator. “Any more than a 10% incline poses a suffocation risk to your baby.  They can get in the chin-to-chest position and have a difficult time breathing. Swings, bouncers, or propping them up in a pillow is unsafe for sleep.”

The U.S. Centers for Disease Control and Prevention (CDC) reported about 3,700 infants younger than one died due to sudden unexpected infant deaths (SUID) in 2022. The report indicates that 28 percent of those deaths were due to accidental suffocation and strangulation in bed. 

Through early November, nine sleep-related deaths were recorded at Cook Children’s in 2024. In the past three years, Cook Children’s has seen several infant fatalities due to sleeping on a nursing pillow.

The safest way for babies to sleep is on their back, on a firm surface with a tight-fitted sheet, in a crib or bassinet, or pack ‘n play with no pillows, blankets, bumper pads, or toys. No other children or adults should share the sleep space.

Evans said caregivers should lay their babies down in a safe sleep environment – not the couch, swing, car seat, or an adult bed – when it’s time for sleep.

“There’s just as much risk to your baby when they are taking a nap as when they sleep overnight,” Evans said. “Every sleep time needs to follow safe sleep practices.”

The new CPSC safety standard for nursing pillows relates to labeling, firmness, seam strength, and restraints. It applies to pillows designed to position and support an infant while feeding. The rule is scheduled to take effect in April 2025.

“Nursing pillows are intended to be used for feeding when both the infant and the caregiver are awake, and the caregiver can ensure that the infant’s airways are not covered by the pillow,” according to the CPSC. Injuries occur when a sleeping infant rolls face down on the pillow or their neck falls forward or back, preventing their ability to breathe.

The new standard adds this statement to the label: “Move baby to an infant sleep product, like a crib or bassinet, if baby falls asleep or if you feel drowsy.” 

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The state of Texas is trying to end a program that allows thousands of children to thrive.

That’s the message Liz Piñon wants to send to state leaders trying to end the Cook Children’s Health Plan. Liz’s children are among the 8,000 medically fragile kids on the health plan; her 12-year-old triplets and 19-year-old son have various medical needs and have relied on CCHP for six years.

In March, the Texas Health and Human Services Commission announced plans to deny Cook Children’s a new contract for the Medicaid STAR and CHIP managed care programs. In June, Cook Children’s took legal action against the state for its decision to cut funding for the program, which has provided care for more than 20 years.

“If they don't have a child like we do, I feel like all families have to know that they can be in this position from one minute to the next,” she said. “And if they do, you know, having a system like the Cook Children’s Health Plan is such a godsend.”

For Liz’s family, paying for medical needs was like paying for another mortgage.

Liz’s triplets, born at 25 weeks, each have their own medical complexities requiring four or five specialty medications. Liz initially had to stay home with the kids because no daycare would take them due to their medical needs. The financial cost of medication, medical care and other specialty needs quickly added up.

“It was such a nightmare doing private insurance for our kids,” Liz said. “We were living check-to-check. Even though my husband had a white collar job, we were in the food lines the last week of the month to get vegetables to puree.”

Six years ago, everything changed when the family applied for care with Cook Children’s Health Plan. When Liz called to apply, the nurse she talked to knew the kids’ doctors, the equipment they might need and the therapists they might need now and in the future. This was different from talking to a private insurance agent who likely had no connection to Liz’s family, the doctors they saw or the community care available to them.

With Cook Children's Health Plan, the family has access to specialists, therapists and various programs under the same roof as opposed to having to navigate multiple practices for each medical need.

For almost eight years, the family saw the same pediatrician at Cook Children’s. While the doctor is no longer at the hospital, it made all the difference to have a physician who developed a relationship with the kids and the family as a whole.

“It's not easy being a Latina with special needs kids in Texas, right? I feel like I was always scrutinized a whole lot more,” Liz said. “So it was just nice to know that this doctor knew my family, knew everything I did for my kids, right? And was a voice for our family.”

Cook Children’s Health Plan also connects families with a service coordinator, who helps coordinate all the specialized care the family needs. In Liz’s case, the coordinator not only connected the family with specialists and set up appointments, but she also ensured the triplets could attend daycare. This alone changed Liz’s life; Liz has been able to serve as an expert on the Department of Education Committee because she does not have to stay home 24/7.

As young tweens, the Piñon triplets are thriving. One of her daughters participated in a wheelchair dance performance in Los Angeles this summer. Her other daughter, who has severe anxiety, was able to perform on a stage in Disney with her choir.

“Anyone that sees my kids says, ‘Oh, they look fine,’” she said. “They don't know all the thousands of appointments, thousands of hours of therapy, thousands of phone calls that have been made for them to be thriving and doing as well as they are.”

The Cook Children’s Health Plan has allowed Liz and her family to thrive. That may not have been the case under a different insurance plan, like the ones the state plans to fund instead. Without Cook Children’s Health Plan, thousands of kids may lose that same opportunity to truly thrive.

Read more about the conference on the Congenital Hyperinsulinism International website.

It’s been said often, especially in health care – kids are resilient. It's true that kids can completely surprise adults with how well they cope and weather the storms of life. However, resiliency in children is not universal, and we cannot expect our children to be resilient innately. Resiliency must be taught and fostered.  

From kids getting ready to attend kindergarten, to teenagers on the cusp of adulthood have all survived a pandemic. Parents and teachers could easily and quickly tell you that not all kids are resilient. It is reported that emergency room visits due to mental health concerns increased by 24% for children 5-11 years old and even more for children 12-18 years old from March 2020 to October 2020. In early 2021, suicide attempts more than doubled in girls from two years prior, according to MedStar. Given social media and cyberbullying in conjunction with a pandemic and economic crisis, we can be sure that our children are not innately resilient.

While children can often appear to be coping more effectively than adults, we cannot ignore the increase in children who are in mental health crises. Many areas where children struggle with resilience could be helped by simply limiting their exposure. We are asking our children to live and function outside their developmental ability to understand the world they are being exposed to. It is no wonder that children are struggling. 

So before diving into resilience, consider your child’s age and developmental abilities and what they are currently being exposed to. If there is a gap, consider narrowing the gap by ensuring that your child is involved in developmentally appropriate activities and is exposed to developmentally appropriate media and material. 

Resilience can be defined as children’s ability to thrive when faced with challenges, according to the American Psychological Association. Challenges for kids can range from starting a new school or having a friend move away to bullying and harmful exposure on social media. Parents should be aware of the many things that may be causing a child stress or testing their resilience. The goal would be for children to quickly return to their baseline following any kind of stressful or challenging experience.

All my girls have had a school year that included heavy challenges. Following the pandemic and upon just returning to school in person, one of my daughter’s teachers went out on maternity leave. While this was so exciting and something to be celebrated, my daughter did not handle to the change to a new teacher well at all especially following such an uncertain time. It resulted in some very difficult evenings. 

Now another daughter has experienced a leave-of-absence for her teacher, and it became very difficult for her to cope with the constant changes in her classroom each day due to not having a long-term substitute. While these challenges may seem simple to adults, the change in daily routines, the anxiety of getting to know someone new, and the unmet expectations along with other stressors test our children’s resiliency. 

There are so many things that children experience that could be breaking their resiliency. As parents and caregivers, it is our job to help build their resiliency. The American Psychological Association says, “Building resilience—the ability to adapt well to adversity, trauma, tragedy, threats, or even significant sources of stress—can help our children manage stress and feelings of anxiety and uncertainty.”

It may surprise you that there are some very simple ways to help children build their resiliency.

1. Perceived control is a large part of resiliency. Offering children opportunities to increase their perceived control will help to build their resiliency. Perceived control is a child’s belief in their ability to control events or situations. If a child has high perceived control, they believe that their response to a situation or event matters to the overall feeling of that experience. For example, a child who spills a glass of milk on the floor with low perceived control may just sit down and cry or run away from the spilled milk. The child with higher perceived control will grab the paper towels and start to clean up the milk because they believe they can, and they believe it will make it better. So, as parents and caregivers, we can grow children’s perceived control by offering choices and giving them independence. This can be difficult for adults who love to be in control. However, it is important that children recognize that they can move through a challenge based on their response or actions to that challenge. The more opportunities we provide for our children to be challenged and then be successful, we will be giving them the opportunity to grow their perceived control. Playing sports, learning a new instrument, or cooking a meal are all places that may present challenges that a child could learn how to respond to that challenge and feel successful.
2. Maintaining structure and routine will help to grow resiliency for your child. Maintaining structure will show children how to prioritize and manage their time and circumstances so that when life inevitably throws them a curveball, they know how to adapt and adjust. When children are constantly out of routine without an opportunity to get a handle on anything, they are adapting so often that they are not able to learn follow-through, time management, or how to emotionally cope with the constant change. Structure and routine create a safe space to learn to feel confident in completing tasks, making plans, and managing emotions. This safe space of routine will also allow children to be successful which builds their confidence. This will help them to quickly return to their baseline when something is challenging.
3. A strong community and/or supportive adult relationships are also paramount to building resiliency. This cannot be said enough. A strong relationship with an adult will provide a sense of strength to any child to let them know they are not alone in whatever challenges they face. No one wants to feel alone while feeling overwhelmed. Spending time with your child, asking intentional questions, and really listening will provide a space for resilience to grow. When a child can hear how parents or caregivers have handled difficult situations and circumstances, it will help to guide how they choose to respond. Outside of close relationships with adults (coaches, teachers, parents, neighbors, etc.), it is important for your children to feel a part of a community and something bigger than themselves. This may be a place where faith is also mobilized like within a church or other community. By partnering with others who are like-minded and will offer hope and perspective in difficult situations, resiliency is given a chance to grow.  Relationships grow resiliency in every way. We were made to do this life together.

Resiliency can be grown. We can help our children to become more resilient, and adults can also work to become more resilient. We want children to be empowered by the challenges they face, not paralyzed. The more we can help them grow in resiliency, the more we are supporting the health and well-being of future generations. We want our kids to know how to bounce back. We never know when another experience similar to the pandemic will occur, but we want to and raise others to rise above the challenge and come out stronger on the other side!

Cook Children’s employee Danny Peltier, his wife, Sarah, and their two children are preparing for a big adventure. In November, the family will travel to Walt Disney World with Kidd’s Kids, a nonprofit organization founded by late radio host sensation Kidd Kraddick and dedicated to creating special memories for families with life-altering or life-threatening conditions.

Danny and both of his children live with a condition called Hereditary Spastic Paraplegia (HSP),  an inherited neurological disorder that causes weakness and stiffness in the legs. The Peltiers were nominated for the trip by a parent of one of Sarah’s students. 

“I've been listening to the radio show my whole life and I know they get thousands and thousands of applications a year and I didn't expect anything to come out of it,” said Sarah, a 6th grade math teacher in Birdville Independent School District. “We were all very surprised whenever we walked into the Cook Children’s Child Life Zone a few weeks ago and were told we had been chosen.”

The Peltiers learned they would join a host of other families on the trip during a surprise announcement in August at Cook Children’s Medical Center where Danny is an employee and several Cook Children’s clinicians serve as medical volunteers for the annual Kidd’s Kids adventure. 

Rising Above

Danny has never been afraid of adventure, even with a condition that impacts his gait, balance and ability to walk unencumbered. In his spare time, you’ll find Danny wheeling around a sports field or court, adapting the game so that he and others in wheelchairs can challenge their physical skill and exercise their competitive spirits. He is a long-time competitor with RISE Adaptive Sports. 

Adapting to his circumstances and rising to challenges is something Danny has done since childhood. 

“I've always adapted my situation to work best for me,” Danny said. “I didn’t have a wheelchair growing up, but all through elementary school, everything that we did, I just kind of made it work. We bent the rules to make it fair for me to be able to play. Then, in college, I got a wheelchair. Seeing how much easier it was for me to get around and move on campus in a wheelchair opened up my eyes to how my life was going to be completely different."

Danny joined other wheelchair-bound classmates and began playing all types of sports, including basketball and football. Together they identified ways to adapt a number of different games for the disabled community.  

Family History Unlocks Mystery

As a kid, Danny, his family and his doctors believed he had cerebral palsy. There was no reason to question the diagnosis. It made sense given his symptoms. 

Then came the birth of his daughter, Evelyn, now 10. When Evelyn began to walk, Danny and Sarah noticed she had a similar gait as Danny when he was a child. But cerebral palsy is not hereditary, which raised some red flags and led the Peltiers to ask a lot of questions. 

Was it possible that Danny was misdiagnosed all those years ago? Could his condition actually be genetic? The family wasn’t aware of any relatives with a hereditary condition like Danny’s. Until the birth of Evelyn, there was no indication of a familial link. 

The Peltiers had Evelyn undergo genetic testing to try to pinpoint a diagnosis, something that wasn’t readily available to Danny when he was a child. The results unlocked a generational mystery. 

Evelyn had HSP, and given HSP’s link to genetics, that meant Danny likely had it, too — a theory that genetic testing on Danny ultimately proved.  

There are various forms of HSP, with varying degrees of symptoms and complications. Danny and Evelyn have spastic paraplegia 3A. 

“Whenever we got our daughter diagnosed, they had only identified maybe two dozen variations of HSP, and now there's probably another dozen or two that they've identified,” Sarah explained. “Genetic wise, they've been able to identify the genes causing the condition, and the variations can range from like our family where it's pretty mildly affecting the lower limbs to full body involvement affecting intellect and speech, upper body control and a whole bunch of cognitive function. Some are progressive, some are not. Fortunately, 3A is not very progressive.”

After the diagnosis discovery, Danny wanted to dig deeper into his family history knowing there had to be others in his genetic line with the condition. Danny completed an ancestry kit, unlocking even more of the mystery.   

“We were able to track down other family members that we didn’t know of that actually had the same diagnosis,” he said. 

An Empathetic Example 

While it was surprising, the revelation of Danny’s diagnosis didn’t change his response to his circumstances. He did what he always does — adapted. 

Sarah had to adapt in her own way, too. 

“Accepting that the future looks different for your children than you thought it would is definitely a grieving process,” she said. “I had to allow myself the space and time to do that. But for me it was just really important that that was away from the kids. My closet floor saw plenty of tears, but in front of the kids, we were really excited about trying out this new doctor's office, or we tried to make everything as fun as we could because we knew that this was their new reality, and we didn't want them to ever feel like this was any sort of negative experience for them.”

Now, they’re both teaching Evelyn and their 6-year-old son, William, who also was born with HSP, to do the same. The family water skis with RISE Adaptive Sports and Evelyn is a national gold and silver medal-winning swimmer who has competed against Paralymic-bound athletes. William plays baseball and will soon begin playing wheelchair basketball.

Danny’s challenges give him unique on-the-job insight for the Cook Children’s patients and families he encounters daily, too. As the practice manager for Cook Children’s Outpatient Psychiatry, Danny is a real-life model of resilience for patients struggling with their own challenges. 

He often uses his wheelchair as a starting point for connecting through conversation. 

“I try to bring kids out of their shell a little bit and show them what they can do in a chair and let them ask questions,” he said. “We’re always inviting anybody we see in a chair to come play sports with us and telling them how to get involved in adaptive sports. Just letting people know that it’s not the end of the world to be in a wheelchair or have a disability. There’s still a lot of options and things that you can do.”

No doubt, the entire family will be as much of an inspiration to those they encounter at Walt Disney World in November as they are to those at home.

Related Stories:

2 Cook Children's Employees Surprised with Disney Trips for their Families Thanks to Kidd's Kids

I do not have adequate words for the pure joy and humility I felt this past week. Our family was chosen to attend the Kidd’s Kids 2023 trip to Disney World and was surprised alongside another incredible, resilient family! 

I was encouraged by some of the most incredible coworkers to apply for this trip. Over the past year and a half, these people have walked alongside our family with shared tears, unexplainable generosity and constant love. My husband and I were reluctant to apply since there are so many families and kiddos who would benefit from a trip like this.

I’ve volunteered and worked at Cook Children’s for two decades and have seen countless kiddos be chosen for Kidd’s Kids. I never thought I would ever be in a position where my own family qualified. However, as I reached out to my friends and coworkers for advice and thoughts, I was only met with encouragement to put in the application. We had just decided to cancel our plans to go to Disney later this year due to finances, so we ultimately decided we should put in the application and see what happened.

Our middle daughter, Averly, was diagnosed with a low-grade glioneuronal (brain) tumor in April 2022 after having a seizure at home on March 29th. Our PCP, M. Kathleen Powderly, M.D. of Cook Children's Pediatrics Magnolia, ordered an MRI in addition to many other tests and within a week found the tumor. 

The same week, we were attending my grandfather’s funeral and grappling with shock and grief. The next five months consisted of many doctor appointments seeking opinions from all over the country. 

This time last year, our daughter was headed into a nine-hour brain surgery to remove her tumor just behind her motor cortex that controls her right side. Her surgery was on Aug. 24, 2022. Our neurosurgeon was able to resect 98-99% of her tumor. She had right-sided weakness and loss of feeling in her right foot and great toe following surgery; however, she has regained nearly all her feeling and is very strong. Following surgery, Averly has followed up every three months at St. Jude Research Hospital to monitor the small amount of residue tumor and will continue to follow up there indefinitely.

All three of our girls have been so strong and resilient. Through moments of sadness and frustration, they have come out on the other side more beautiful and with deeper faith. Topics I never thought I would be addressing with them, though, have become normal conversations in our home – tumors, cancer, death, surgery, and countless stories of others we have met along the way. Averly has unwavering faith and has maintained an incredible sense of humor since her tumor (affectionately named Wally for his comparison to walnut-size) was evicted. My other girls have grown in empathy and flexibility. Yet – they are kids and this has all been too much at moments. 

When we returned from our vacation, I was expecting to come home to news about our selection status with Kidd’s Kids, but we had no mail. I dreamt Sunday night that we weren’t accepted. So in worry, I reached out to Daniel D. Guzman, M.D., on Monday. While he didn’t have an answer for me, he did need our family for a photo shoot for Aim for Safety on Tuesday. It was only the second day of school, but I figured there wouldn’t be a better time and this would be a fun experience for the girls.

I pulled everyone from their lunch hours on Tuesday and we headed up to the hospital. He had told me there would be another family with us, so I wasn’t surprised to see Danny Peltier and his family. As we walked into the Child Life Zone, I could never have envisioned that moment. 

So many precious faces staring back at all of us – “You’re going to Disney World!” It was the pinnacle of support and love! As I looked at my kids’ faces, my eyes blurred with tears. 

Averly had nothing but PURE joy and excitement. Emilynn, my oldest, was moved to tears and that just undid me – tears of joy and disbelief. My sweet Maelee was so confused and overwhelmed that she melted down. #reality

She was such a picture of receiving great news after hard times…sometimes you just don’t know how to step out of the hard. Eventually, it made sense to her and I can report that she is THRILLED!

Averly immediately bonded with the Peltier’s daughter. As I surveyed the room, I saw all those who had loved and supported us from the first day with true extravagance! I was so overjoyed for my girls.

When I met Kidd Kraddick at Cook Children’s a little over 20 years ago, I never imagined my future family would benefit from his love and legacy! This is going to be a trip of celebration for our family and all the other Kidd’s Kids families – celebration of resiliency and choosing to say ‘yes’ to hard! We are deeply grateful and humbled for this opportunity! 

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!

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.

Four-year-old Winnie Babalola smiles all the time and talks nonstop. But it wasn’t always that way.

Diagnosed with Sickle Cell Disease at two weeks old, Winnie faced a condition that can cause damage to organs and intense pain episodes. She began treatment at the Cook Children’s Sickle Cell Center where the hematology team followed her. “Every time Winnie had a fever or got sick, she needed to be in the hospital for several days of monitoring,” said Ademilola Awoyemi, Winnie’s mom.

Bone Marrow Transplant Brings Hope

In 2019, Winnie landed in the hospital where doctors discovered her spleen was markedly enlarged, requiring a blood transfusion. Soon after, the family met with Richard Howrey, M.D., associate medical director of the Stem Cell Transplant Program, to discuss curative therapy for 10-month-old Winnie. The family decided Winnie would undergo a bone marrow transplant after discovering Winnie’s brother, Wisdom, was a perfect match.

“The goal of a transplant is to wipe out her diseased bone marrow that only makes sickle cells and replace it with healthy bone marrow essentially curing her of Sickle Cell Disease,” Dr. Howrey said. 

Transplanting patients early in life helps to prevent long-term complications, according to Gretchen Eames, M.D., M.P.H., medical director of the Stem Cell Transplant Program. Those who do not undergo transplants have a much harder time in adulthood with access to healthcare, insurance issues and difficulty navigating a chronic disease. They also have a shorter life expectancy due to progressive complications of Sickle Cell Disease

Journey to Healing

Because of the pandemic, Winnie’s transplant was delayed until June 2021 when the process began with surgery to place a central line. She then received chemotherapy over the span of a week before the transplant. During the first phase of the transplant, Winnie experienced the typically expected side effects including severe mouth sores which required IV narcotics for pain and a feeding tube to maintain nutrition, along with multiple transfusions for low blood counts.

“Transplant comes with risks, and Winnie experienced a few complications including thrombotic microangiopathic anemia (TMA) which caused high blood pressure and a breakdown of the red blood cells,” Dr. Howrey said. “We adjusted her medications and gave her a specific medication which targets the pathway that causes TMA and thankfully, she had a great response.”

Throughout all of this, Ademilola said everyone at Cook Children’s helped her to focus on taking it one day at a time.

“From day one, the doctors and nurses were tremendous and gave Winnie the best treatment,” Ademilola said. “It was hard, but they really brightened our days.” 

Winnie was discharged two months after her transplant, has continued to do well, and is now fully recovered.

Brighter Days Ahead

The prognosis of patients with Sickle Cell Disease who undergo matched sibling bone marrow transplants is very good, with a survival rate of about 95%. Having a matched sibling was a great advantage for Winnie. Compared with other types of bone marrow transplants, matched sibling transplants have a lower risk of graft versus host disease, which is when the donated bone marrow attacks the body.

Winnie’s young age and lack of other complications such as stroke or end organ damage prior to transplant was another factor in her favor.

“Now Winnie is off all medications and doing great,” Dr. Howrey said. “Her immune system has fully recovered. I fully anticipate Winnie will be cured from Sickle Cell Disease.”

Ademilola said the bone marrow transplant changed their lives. Last month, Winnie walked into school for the first time, and the preschooler couldn’t be happier.

“Winnie is a fighter,” Dr. Eames said. “Providing life-saving therapy and carrying patients like Winnie through this journey to a successful outcome is very rewarding.”

National Teddy Bear Day is Sept. 9.  We're celebrating in a BEARY special way for this patient tradition at Cook Children's.

In July, the Cook Children's Spiritual Care team called on the community to restock the prayer bear den. As of Sept. 8, the den has more than 3,200 additional prayer bears thanks to our generous community.

Prayer bears are a way to remind patients that they are not alone. The Spiritual Care team gives out over 300 bears per week at the Medical Center. These bears are given to patients who need encouragement or support after a painful procedure, during a lengthy hospital stay or during difficult times.

Many congregations and community organizations participate in the interfaith ministry's PrayerBear program. New toy teddy bears of all shapes, sizes and colors are blessed during worship services, then they are delivered to medical center chaplains. 

Would you like to get involved? All bears must be new, with no scent, and with no words/logos. Email prayerbear@cookchildrens.org or donate at giving.cookchildrens.org.

“This is a great community event for us and for Fort Worth to support our patients and for our patients to feel empowered,” said Pamela J. Sherman, M.D., Orthopedist at Cook Children's. “A lot of these patients have started with us as babies. Rock climbing really is a way for them to feel empowered and for them to see that it's different but it still works.”

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

It was a typical day for Christina and Craig Sadberry and their 11-year-old son Bryson when they took him for a March 2022 appointment at Cook Children’s. As part of their routine, they always stop by the Cook Children’s replica LEGO display and look into the Sparklefly Recording Studio at the Child Life Zone where patients can sing, record, and play music. For the first time, they saw someone inside the studio: Recording Studio Producer Raymond Turner was playing the keyboard.

“I would like to meet that guy,” Craig said to Christina.

Little did Craig know that within just an hour later, his wife and the intriguing piano man in that studio would both read messages that would change their lives forever.

For Christmas, Turner’s wife, Maria Turner, gave him a 23andMe kit because Raymond wanted to know which countries in Africa he was from and he hoped to visit one day. He said African people would randomly ask if he was from Cameroon, but his 23andMe results showed that he’s from sub-Saharan Africa, west Nigeria and Ghana. Raymond was thrilled to learn something about his ancestry, not knowing he was about to uncover a more surprising connection with someone who walked the same Cook Children’s hallways as he.

According to 23andMe, Raymond had a “familial match, sibling.” That match’s name? Christina Sadberry. The same Christina Sadberry who, unbeknownst to him, had peered into the studio that very day while he was playing the keyboard.  

A few days earlier, Raymond had messaged Christina on 23andMe. Her 23andMe profile said she had not been active for a few months. 

“I said in the message, ‘I don’t even know if you will want to reach out. This is really strange, I know, but regardless I hope you and your family are doing well,” Raymond said.

Raymond said he kept checking 23andMe and there was no activity from Christina. A few days later, Maria “Facebook stalked” Christina and found out that they had a mutual friend. Maria asked the mutual friend to talk to Christina and let her know to check her Facebook messages. 

The very next day, Maria and Christina were messaging each other, and Maria told her that Raymond’s results showed that she was his sister. They became Facebook friends and Christina saw Maria’s pictures of the family. She clicked on Raymond’s profile.

“Wait, your husband works at Cook Children’s?” she messaged Maria.

“Yes,” Maria said.

“Was he wearing a red shirt today?”   

The realization that Christina had set eyes on her long-lost brother the very day the connection was unveiled brought Maria to tears. She was driving and had to pull over on the side of the road to collect herself. She called Raymond to share the news.

“Wednesday was the first time we saw somebody in there,” Christina said. “We probably walked past you a billion times.”

Raymond said it had been a frantic day because his ID badge broke and he had computer issues, so he was in the studio for brief windows of time. It was in one of those fateful moments that Christina and her family passed by.

All these years, the man in the studio across from the LEGO set was her half-brother. An extension of family. Family that she never knew she had.

“We talk now about how grateful we are to just be a part of not only God’s bigger story of reconciliation but thankful we have found each other and just we are in each other’s hearts even before we physically met each other,” Raymond said. “Our hearts knew that the other was out there and were still kind of searching.”

Raymond joined Cook Children’s in December 2015 and Christina started bringing her son, Bryson, for his treatments starting in spring 2015. Christina is in the U.S. Air Force and lived in multiple places before she and her family moved to Keller. In the past seven years, it’s likely they passed by each other at Cook Children’s, not knowing they were brother and sister, and not knowing the other existed.

“There are no accidents in this world,” Raymond said. “I hope that if people realize anything through this, it’s that yeah there are moments in our lives that we consider to be serendipitous, but when you put all of these things together when we recount all of this, there’s no way we could have planned this, could have scripted this. This was a divine appointment, this was on God’s timetable and it was at the right moment.”

Reunion

On Friday, March 25, Raymond and Christina met in person at the Atrium of Cook Children’s and brought their families along. Raymond and Christina wondered how they would be received and were anxious about what would happen.

All of that fell away when Christina walked through the door and they hugged with tears rolling down their faces.

“Oh, man. I never would’ve expected it,” Christina said after they embraced each other. “I don’t even know what to say. Just seeing you, I’m speechless.”

Raymond said it felt like there had been no lapse of time.

“That’s probably the best way I can put into words is it was like this immediate feeling ‘this is blood,’” Raymond said. “It felt like home. It was like I was hugging the sister I had known all my life.” 

Their spouses and children witnessed the moment they had all been waiting for and met each other.

“You’re a missing piece of his puzzle, too,” Maria said.

For the special meeting, Raymond and Maria’s eldest son, Isaiah, 17, who has his own design and printing company, created two T-shirts with the words “Cousin Vibes” on the front. Their youngest son Elijah, 9, wore one and gave the other to his cousin Bryson, who put it on over his hoodie, beaming a huge smile.  

The families sat down and talked about how they reconnected with each other.

Craig talked about the moment that Christina read the message on Facebook. She was crying and shaking; her husband asked what was wrong.

“I think I found my brother,” Christina told him.

Reconnecting

These days, Raymond and Christina are in constant communication, asking each other their favorite colors, and favorite Blue Bell ice cream flavors.

“There are some eerie similarities,” Raymond said. “We both liked Cookies ‘n Cream ice cream growing up and then switched to Butter Pecan in our 20s.”

Christina gained a sister-in-law and two nephews, and Raymond gained a brother-in-law, two nephews and a niece.

From March until the first week of July, Christina and Raymond lived 45 minutes apart and the families spent time together every chance they could, celebrating birthdays, holidays, sporting events, and dinners at least once a week.

Before meeting Christina, Raymond knew of his two younger brothers and one other younger sister.

Christina was adopted and grew up with a small family of her adoptive mom, dad and two brothers. She had been searching for her biological family members since 2006 when she signed up for 23andMe. During that time, her 23andMe inbox remained empty.

She said that her biological mom told her that she was a secret. There was no doubt in Christina's mind that Raymond was her big brother. Her adoption paper confirmed information that only Raymond could know.

“This right here is nothing I expected,” Christina said. “It can only go up from here. It already feels like family.”

Raymond and Christina talk about growing old together, too.

“She said we’ll be going to the park to sit and feed the birds together,” Raymond said. “There were all these years that we missed, but we believe there will be more years ahead to get to know each other than the ones, and I won’t even say, lost, which were preparing us for this moment and to appreciate what we have.”

In early July, due to a reassignment with the Air Force, Christina and her family moved to Florida, but the Sadberrys and Turners still text and FaceTime as often as possible. They are looking forward to their first Thanksgiving together at the Sadberrys’ new home in Florida.

Raymond and Christina still have some reconnecting to do with other family members, but Raymond says they are grateful and realize that these moments don’t happen for everyone.

“It happened at the appointed time, at the right time and it just blows my mind,” Raymond said. “It’s just God’s timing in all of it and all the things. I believe things in heaven and earth had to move for all of those things to move at the right time, in the right place.”

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

Like an earthquake rumbling underfoot, crumpling the ground beneath, the suicide of a loved one has a way of knocking you to your hands and knees.

After the initial shock wave throws you, constant aftershocks of emotions—running the gamut from guilt to shame to horror to inconsolable sadness—may leave you struggling to regain footing long after your loved one has died.

Survivors of suicide often experience a complicated type of grief that differs from other types of bereavement, mental health experts say.

“With suicide grief, they’re dealing with a trauma on top of the loss,” says Sharon Walker, LCSW, a therapist in Arlington who specializes in complex trauma and trauma grief. “With most people who die by suicide, it’s usually violent or tragic in some way. So, the person grieving has to deal with the fact that a person chose to take their life and that how they died. That changes the grief process.”

Walker, a former longtime-facilitator of the support group Survivors of Suicide (SOS) in Fort Worth, says another dynamic comes into play—the social stigma attached to suicide.

“Death can be tragic, like a murder or a car vehicle accident. But the stigma around suicide still exists today, and so family members have to contend with that piece, as well,” she says. “It makes their grief different.”

In April 2020, the Centers for Disease Control and Prevention (CDC) ranked suicide as the 10^th leading cause of death based on its most recent data collected in 2018. It was listed as the second-leading cause of death for Americans ages 10-34 and the fourth-leading cause for ages 35-54, according to CDC reports.

It has long been accepted that when someone dies by suicide, six people are directly affected by it. But a researched-based estimate published on the American Association of Suicidology’s website suggests the ripple effect of one suicide extends far past that, personally affecting 135 people on average. Based on that, an estimated 6.9 million people are touched by suicide annually.

The Alliance of Hope for Suicide Loss Survivors, an international non-profit group that operates an online support group, lists the dynamics that can complicate suicide bereavement on its website. The factors include circumstances surrounding the loss; post-traumatic stress; stigma and isolation; prejudices involving suicide; investigations into the deaths; religious and spiritual beliefs on suicide; family and relationship tensions; and survivors’ questions about why their loved ones chose to take their own lives and whether they could have done something differently to prevent it.

Through her years working with suicide survivors, Walker has seen families experience all of these dynamics. And some, even more than a decade later, still wrestle with them.

“Grief is not something we ever get over, and it doesn’t ever stop. What we learn to do is grow around our grief, to encompass it and incorporate it or manage it into our own life,” she says. “We walk with it.”

When talking with families and friends facing a loss from suicide, she reminds them that they can get hijacked by their grief. And that everyone has their own process of grieving the loss.

“Every time you turn around—there’s a reminder, there’s a statement, there’s a feeling, there’s an emotion—and you are overwhelmed by your grief,” she says. “And as we walk with this, and you learn to understand your own grief process, it becomes something that you can manage.”

“It’s not that the grief gets smaller, but you grow big enough around it to start being able to manage it,” she says. “And then you can take it off the shelf and touch it when you want. It becomes something that you can eventually manage and live with and incorporate in your life. But as far as ever getting over it, there is no such thing.”

Many suicide survivors circle back to help other survivors find their way out of the devastation caused by a loved one’s suicide. They take the energy from their own grief and put it toward helping others, Walker says. The success behind the SOS group she ran for 18 years was because survivors returned to give back “because they knew how devastating it was to other people.”

“And the very act of sitting there and saying, ‘You can survive this. We didn’t think we were able to either, but we’re here to help you know that you can.’ Well, as a professional, I cannot convey that any more brilliantly than what a survivor can to another survivor,” she says.

Just Breathe

Brad Hunstable, CEO of electric motor company Linear Labs in Fort Worth and an Army veteran, understands firsthand the complexities that grieving families face after losing a child to suicide.

Nothing prepared him for April 17, 2020, the day a figurative “nuclear bomb” went off in his world, altering it forever. Hunstable had just finished a call when his daughter, then 8, ran to him, telling him something was wrong with her big brother Hayden. The 12-year-old had been playing his favorite video game Fortnite in his bedroom while his dad worked from their Aledo home.

Hunstable rushed upstairs to his son’s bedroom and found Hayden in the closet, unresponsive. He called 911 and tried unsuccessfully to revive him. Hayden—described as a fun-loving, active boy who enjoyed playing sports and loved life––died by suicide four days shy of his 13^th birthday.

Hayden didn’t suffer from depression or have any diagnosed mental health issues. No one could have predicted he would take his own life, his dad says.

Hunstable believes isolation during the initial COVID-19 stay-at-home mandate—attending school online and not getting to see friends regularly—took a toll on his son and factored into his impulsive decision to end his own life. It was also later discovered that Hayden had accidentally broken a large-screen gaming monitor just before his death—a monitor he used to play Fortnite and similar to one he’d broken months earlier but had worked to replace.

He was excited about his new replacement monitor and was set to have friends over to play Fortnite at his upcoming birthday party, says his dad, who founded Hayden’s Corner, which advocates mandated resilience classes for children and champions responsible gaming education, in honor of his son.

Hunstable—who also produced a short documentary about Hayden’s death titled “Almost Thirteen”—has spoken to various mental health experts about youth suicide and believes impulsivity plays a huge role. (Parental guidance and discretion is advised when watching Hunstable’s documentary because the disturbing subject matter may cause emotional distress.)

“When you look at youth suicide, 55% of them are impulsive and 50% don’t have a previous mental health diagnosis,” he says. “They may have something, but it’s not diagnosed. Impulsive suicide in youth happens because a boyfriend broke up with me…I got into a fight with my parents…a girlfriend just broke up with me…I’m being bullied.

 “In Hayden’s case, he broke his monitor for a second time right before his birthday, in the middle of a pandemic,” Hunstable says.

Developing resiliency is key in addressing suicide among children and teens, he says.

 “It’s always complicated. It’s never simple,” he says of life and what sometimes leads young people to impulsively choose suicide. “When you get the perfect storm of complexity, and they haven’t developed some resilience capabilities—and you haven’t taught them or had open dialogue about these things or it’s just too much—this is where you end up.”

Hunstable believes parents need to have “uncomfortable conversations” with their children about suicide so they know how to cope if the impulse ever hits them. Research shows that bringing up the topic of suicide in an age-appropriate manner does not plant the idea in children’s minds, he says, adding “that’s a myth.”

Find a way to help them contend with their emotions and impulses, like teaching them breathing techniques, meditation, playing guitar or screaming into a pillow, he says. Let them know it’s okay to talk about it, Hunstable adds, and if it happens when you’re not around, teach them to go to a trusted adult like a teacher or a grandparent.

What would he say to parents who are hesitant to discuss suicide with their children and methods to cope with their feelings?

“I’d say, ‘Do you want to be in my shoes?’ My son disappeared off the face of the Earth. I still struggle with that concept. He was there one minute—and then he went poof. You don’t want to do this,” he says. “It has nearly broken me. It nearly broke my family. It still might.”

“Hayden doesn’t have PTSD—we have PTSD,” Hunstable says of himself and his daughter, who found her brother. “I know it sounds like a cliché because I used to think the same thing. I’d hear parents say, ‘It can happen to your kid.’ Now, I’m that parent, saying that it can happen to your kid. And what’s scary is—it really could.”

Open up

Jamye Coffman, M.D., medical director of The Center for Prevention of Child Abuse and Neglect at Cook Children’s, knows firsthand it can happen to anyone. She lost her son Aaron, 20, to suicide on Aug. 10, 2010.

“I’ve been very open about his death, open about his suicide. And what I’ve found is that a lot of people came to me with similar stories, maybe it wasn’t their child, but with suicide in their family,” she says. “I was amazed at how many people have been touched by suicide. I think they just don’t talk about it because they don’t know how people will receive it.

“I want to talk about it because I want people to know it can affect anybody,” she says. “The rain falls on everybody, right? It doesn’t matter how good, how bad, how rich, how poor––none of that matters.”

Dr. Coffman still recalls getting the call while on vacation as she, her husband and daughter were about to enter Yellowstone National Park. The news sent her and the rest of the family reeling.

Less than a week before his death, she’d been on the phone with him. He was living and working in Lubbock, where his dad, her ex-husband, lived. He wanted to go to community college, so the two had discussed plans.

She didn’t know until after his death that his girlfriend had dumped him just before the suicide. He’d been drinking heavily that night and called a friend, who urged him to call his mom. But he never made that call.

“Obviously, he wasn’t thinking straight,” she says. “He was angry, upset, drunk, sad––all those things. But at the time, nobody really expected this to happen.”

Dr. Coffman wears a necklace with the letter “A” in memory of Aaron, who “gave the best hugs ever.” She describes him as “a super loveable guy,” who was a daredevil and enjoyed skateboarding. He was accepting of others and a good friend. He also was a great big brother to his half-sister, who was seven years his junior, she says.

“He was just a sweetheart. He would call me at times just to chat, which most boys don’t do,” she says, adding the step-family issues caused tension at times, as did Aaron’s troubles with alcohol and marijuana. “Sometimes things were strained, but we still managed to maintain a relationship through all that. We knew we loved each other.”

After Aaron died, Dr. Coffman says the pain was terrible, especially that first year. She wasn’t sure she could endure it and often found herself in her closet, her designated “crying spot.” She spent a lot of time in that closet, she says.

 “When it happens, initially, you don’t think you’re going to survive it,” Dr. Coffman says. “There’s no way around it…you have to work your way through it and own it. But even though you do, it still never goes away.

“It does get better,” she adds. “The really bad moments hit you less and less as the years go by. There are less triggers. I think it was the five-year mark when I figured out, ‘I can survive.’”

She also keeps a piece of paper tacked to a corkboard on her office wall. She doesn’t know who wrote it or even where she found it, but it has made a difference to her as a suicide survivor.

The typed words on the paper are simply put:

I don’t like it.

I don’t have to like it.

What I do have to do is make a choice about my living.

What I do have to do is accept it and go on living.

The choice is mine.

Dr. Coffman has read those words daily for more than 10 years as a reminder that the choice is hers.

Tackling the magnitude of this type of grief is different for everyone, she says. Some people do well with therapy, while others may not. Some may do better with families and friends who are present and just sit and listen. Try different things until you find what works for you, she says.

Something she learned early on at a grief support clinic and has found to be true is that there are three camps of people: Those who are hurtful. Those who are neither hurtful nor helpful. And those who are helpful.

“Go to the helpful, avoid the others,” she says for those grieving the loss of a loved one’s suicide. “There were some people that I had to just not communicate with because things they said were hurtful––things they didn’t mean to be hurtful. But, you know, things like, ‘God has a reason for everything.’ Well, when you have somebody die, there isn’t a good reason. That’s not helpful.”

What was helpful for Dr. Coffman was a supportive family and friends. Those who didn’t try to fix anything but would listen when she needed to talk and let her cry when she needed to cry. It made the difference because “it was somebody who really understood me, understood Aaron,” she says.

The family also continues to talk about Aaron, which was important, she says. They still laugh together about the “silly things he did.”

“Whether it’s the cousins or my parents or his brother or sisters…we still have memories and talk about them,” Dr. Coffman says. “I think that’s important––to keep that person alive in your heart. And I think it’s one of the hardest things for people who’ve not experienced something like this. They don’t want to say their name or talk about it because they’re afraid it’ll bring up something bad for you. Well, the bad is always there. But knowing people still remember him and can talk about him and remember the fun things about him, that’s important.”

Like many parents who lose children to suicide, Dr. Coffman also struggled with self-blame and guilt after her son’s death and battled her share of “what-ifs.” She needed reaffirmation that she was a good parent and a good person. That affirmation came from a woman who worked as a secretary at Cook Children’s Emergency Room at the time of Aaron’s death. The woman, who lost her brother to suicide, sent Dr. Coffman a letter, which she says she carried in her purse for many years.

In the letter, one of the things the woman wrote was, “We do the best we can with what we know at the time.” It’s a message that applies to most everything, she says, but as a grieving parent who lost her son to suicide, it was really helpful.

“I had to remind myself of that over and over because any mistakes I made as a parent weren’t intentional. They were done because I thought it was the right thing to do,” she says. “So, hearing that from her, in what she had gone through with her brother…when I would get into the depths of guilt, I would have to preach that to myself, and I would pull out the letter and reread it.”

The death of Aaron has had a lasting effect on Dr. Coffman and her family. It changed every part of her, and it was for the better, she says.

“I don’t think I could ever be the same person,” she says. “I always tell people it has changed me down to the molecular level. It affects every part of you. It can get changed for the worse…you can become bitter. Or you can choose to change in the sense of ‘let me learn from this, let me see what ways I need to change to be a better person.’”

After his death, she did a 180-degree turn on her parenting style “because it changes your ideas of what’s important and what’s not important,” she says. She became more accepting of others, something her son excelled at. And though she thought she was already a kind person, his death helped her become even more so, Dr. Coffman says.

She wants her son to be remembered and encourages others to talk to suicide survivors about their loved ones. It’s one of the most important parts in their healing process.

“It may help them to know that someone else is thinking about their child and has fond memories. And that that person, like Aaron, affected their life in a good way,” Dr. Coffman explains. “Especially when they die young and haven’t had the opportunity to really do a lot. But, even in a short life, they made a difference and still make a difference. Because (Aaron’s life and death) changed me. It changed my husband. It changed my daughter. It changed us to be better people.”

You matter

North Richland Hills resident Ellen Harris understands that sentiment. She lost her 22-year-old daughter Jordan to suicide on March 27, 2012.

Not long after, she and her husband Tom started The Jordan Elizabeth Harris Foundation to ensure their daughter would be remembered. The Fort Worth-based non-profit group focuses on suicide prevention training and awareness, as well as funding research efforts in depression.

“There’s no question that the foundation was and continues to be therapeutic for us because it’s our way to honor her life,” Harris says. “And to bring awareness to a subject that people weren’t willing to talk about.”

Jordan was a former valedictorian and National Merit Scholar in high school and named a Stamps Scholar at the University of Michigan, where she was about to graduate with a degree in organizational studies, a field that focuses on social justice. She had been diagnosed with depression the last six months of her life, which came as a surprise to the Harris family.

None of them would have described her as depressed. Instead, Harris used adjectives like “loving and joyful,” “funny,” “smart” and “full-of-life” to describe her eldest child of three, who loved to travel and help others.

“She didn’t want to worry us, so she never let on. I can remember my brother-in-law over Thanksgiving making the comment that she was the happiest depressed person he had ever known,” Harris says. “So, deep inside, she was struggling, and none of us knew the extent.”

Jordan had done well in college but wasn’t sure what she would do after graduation. She had high-performing roommates and friends who “all seemed to know what they wanted to do. And she didn’t, which weighed on her heavily,” her mom says. “I think she believed she was a failure.”

She had told her mom she was a disappointment to the family and hadn’t done much right in life. Which couldn’t have been farther from the truth, says Harris, adding she has no doubt her daughter was dealing with mental illness at the time of her suicide.

 “She became severely depressed, only I didn’t know what that meant,” she says. “I didn’t know what depression looked like.”

Looking back, she also believes Jordan had “hit a bump in the road” but didn’t have the resilience to overcome it, Harris says. Her daughter had excelled academically, had lots of friends and was pretty. Even though she worked hard for her grades, she hadn’t had to struggle for most of her young life, Harris says.

“I think resilience is a huge part of protection when it comes to suicide,” she says. “That’s part of my theory. I think she just didn’t have a good personal resource for bouncing back when she dealt with adversity.”

“It’s really important that children do (face adversity), even if it’s breaking up with a boyfriend or having acne or something that causes you to struggle a little bit,” Harris says. “I think you need to let your kids fail and figure out how to succeed again without you fixing it.”

Jordan’s death left an “enormous hole” in her heart, Harris says, and she faced a difficult time, especially in the early days. She still can’t watch a video of her daughter, and “I don’t know how long it took me before I could even look at a picture of her without feeling crushed,” she says.

For suicide survivors, it’s important to get a support system in place to help them because the suicide rate for people who have lost someone to it is higher compared to the general public, Harris says. While trying to cope with Jordan’s death, she and her husband tried therapy and various grief support groups but acknowledged that neither of them is much of “a sharer.” Reading books about people who had experienced what she had seemed to help her, she says.

And she immediately put her son and daughter, who were both attending the University of Texas at Austin at the time, into therapy to help them deal with Jordan’s suicide. Both were extremely close to her and devastated by her death. That seemed to help them cope with the loss of their big sister, Harris says.

“Whether it’s going to your church or wherever you find comfort, I think it’s important” to get support, she says.

 It took more than a year for Harris to feel comfortable in large social groups.

“I hated the look in people’s eyes, you know, how sorry they were but how glad they were that it wasn’t them. I mean, let’s face it, that goes through people’s heads,” she says.

Harris also saw firsthand the social stigma attached to suicide. One of the foundation’s missions is to address that issue. From the beginning, she and her husband didn’t try to hide that Jordan had taken her own life. So many people with similar stories approached her, but they had never let on about what really happened with their loved ones, Harris says.

“I think death and serious illness, in general, kind of bring out interesting traits in people,” Harris says. “There were people who didn’t come around and didn’t call because they were obviously uncomfortable with what had happened and with the subject of death, perhaps, and especially the death of a child.”

“But there were other people, who were not necessarily our best friends, who just really stepped up and supported us,” she says. “Some people don’t know how to talk about things like that, and death especially is a really difficult subject. But death by suicide––there’s still such a huge stigma attached to it.”

The foundation’s goal is to have conversations with the public to eliminate that stigma and create an understanding of what’s actually behind the act of suicide. For instance, a common misconception is that those who die by suicide are just selfish, Harris says.

But, in their minds, they’re doing the opposite of selfish, she says. Many of those who kill themselves think they’ll be a burden to their loved ones for the rest of their lives and everyone would be better off without them. With the love she had for her family, Harris says, Jordan wouldn’t have taken her own life if she had been thinking clearly or really understood what her family and friends would face for the rest of their lives.

“It’s not a selfish act on their part,” she says. “This is reaching a depth of hopelessness so deep that they can’t even see anything except how they get out of this pain.”

“They don’t want to die,” she adds. “They just don’t see any other way out.”

The Dave Thomas Foundation for Adoption utilizes survey results collected from employers across the country to identify organizations striving to make adoption a supported option for every working parent, according to the Foundation. Participants are scored and named to the list based on three criteria—financial reimbursement, paid leave and the number of employees eligible for the benefit.

“Cook Children’s adoption assistance program is a cornerstone of the benefits we offer to our employees,” said Keith Holtz, chief administrative officer at Cook Children’s Health Care System. “It is deeply rooted in our belief that every child’s life is sacred and we are honored to be recognized as one of the best adoption-friendly workplaces.”

The road to adoption can be one marked with peaks and valleys, not the least of which is the financial strain associated with application fees, medical expenses and travel costs. But, as many adoptive parents will tell you, it’s a road worth traveling.

“Adoption is a journey filled with foreign paths, fear, disappointments and doubts,” said Megan Mansfield, Au.D., a pediatric audiologist at Cook Children’s and an adoptive mother of two. “But watching my two girls, one dark and the other fair, bent over in belly-rocking giggles at the simple bliss of splashing together in a bathtub full of bubbles, I say with ardent assurance that the road they came by holds no regrets.”

Mansfield said receiving the adoption reimbursement from Cook Children’s brought her to tears.

“Adoption is just one of those processes that seems to have endless outgoing costs with very little financial support from outside sources,” she said. “It pains me to think how many families cannot experience the incredible blessing of adoption not because of the lack of love, desire or support but because of lack of funds. This adoption benefit is rare and it was an immense blessing to our family.”

In 2019, Cook Children’s significantly increased reimbursement limits to employees completing adoptions from $5,000 to the full 2020 IRS limit of $14,300, signaling its commitment to supporting employees welcoming a new life into their homes and hearts. Reimbursements are tax free and cover adoption-associated expenses such as legal and agency fees and home checks. In addition, Cook Children’s added two weeks of paid leave for court dates and any travel necessary for completing the adoption—a benefit separate from and in addition to the health system’s FMLA policy.

“A lot of organizations cap their reimbursement well below the IRS limit,” said Derek Zingg, director of benefits at Cook Children’s. “We wanted to allow the full IRS limit knowing that, for many adoptions, the reimbursement makes only a small dent in the overall cost. But if we can help an employee expand their family and help a child find a home, the benefit is a rewarding one.”

The change in policy was a gift to Claire Cartmel, M.S. Ed., assistant principal at Cook Children’s Jane Justin School. When the Cartmel family’s first attempt to adopt fell through, they were devastated, feeling the pain both emotionally and financially.

“Unfortunately, when a match fails, you lose a decent amount of money that has already been paid for adoption expenses,” Cartmel said. “In our case, we lost a little over $10,000.”

The Cartmels were quickly re-matched. So quickly, in fact, that they welcomed their daughter into the world just four days after the news of their initial failed match. Thanks to the Cook Children’s adoption reimbursement program, the lost fees were recovered, too.

“While our quick re-match was a huge blessing, it came with fear surrounding our bottom line,” Cartmel said. “Once we received the benefit from Cook, we were shocked to see it just about covered the expenses we lost and helped us keep our adoption expenses in a more comfortable range for us.”

Deann Kenaley, RN, BSN, CPN, grew her family through adoption, but not in the way she and her husband had initially planned. In 2015, the Kenaleys began the process of adopting an infant through the Gladney Center for Adoption. In an unexpected twist, the Kenaley’s received a call from child protective services in August 2016 asking them to foster their nephews.

“This changed everything for us,” said Kenaley, a pediatric nurse at Cook Children’s. “We were in line to have an infant, not 4-year-old and 6-year-old boys. But we soon became foster certified and were willing to do anything we needed to do for these two boys to come live with us.”

On November 16, 2017, the Kenaley’s nephews officially became their sons. By the following March the family was ready to open their home and hearts again. It would require many more months of waiting and a great deal of expense.

“The adoption benefit was very helpful for us,” Kenaley said. “We had to put some extra expenses on a credit card and were able to pay it off with that added benefit. So we now have no debt due to our adoption, where many families aren’t as fortunate.”

On January 13, 2020, the Kenaleys brought home their infant daughter.

“Although it was the longest journey ever, it was well worth it,” Kenaley said. “Within five years we became parents to three wonderful children.”

Cook Children’s is honored to be recognized as an adoption-friendly workplace and proud of the role its adoption assistance program plays in helping employees grow their families.

Want to know more? Read our employees' entire adoption stories here.

“His pediatrician said he didn’t look good, and she recommended we drive to the emergency room at the downtown location,” Isabel said. “Something wasn’t right with this blood work.”

Isabel, Ignacio and Matt arrived at Cook Children’s on Feb. 13, 2020. After more testing, Matt was admitted to the oncology unit. The on-call physician gave the family the devastating diagnosis of leukemia.

“She said he had probably been in some bone pain for a while, and we just didn’t know. She went on to tell us that Matt most likely had leukemia, but we didn’t know what kind yet,” Isabel said. “He had a bone marrow biopsy the next morning, and we found out which type he had. It all happened so fast.”

Matt received the formal diagnosis of acute lymphoblastic leukemia (ALL) on Feb. 14, five days after his fourth birthday.

“I remember we spent Valentine’s Day in the hospital cafeteria together after Matt was confirmed to have ALL and had his port placed. None of this really sank in until much later,” Ignacio said. “I still remember asking his doctor, ‘Are you sure? Are you sure this is what it is?’, and they were more than sure.”

Matt’s diagnosis already came with uncertainty and a heightened awareness for his health, but COVID-19 only heightened his parents’ worries and created more isolation.

“It’s been terrifying to go through this at all, because his ability to fight any kind of infection is depleted and his immune system is so vulnerable,” Ignacio said. “Now you have this virus that limits everyone from being out and you’re scared that you might come into contact with someone who has it, then you give Matt a hug and now he may have it too.”

Quarantine takes on a new meaning for oncology patients and their families. COVID-19 has forced parents to make difficult decisions for the safety of their families, including isolation from other patient families.

“A lot of other families that we’ve talked to who are also going through this diagnosis say they are use to the isolation, but when you add the extent of the COVID isolation to this it becomes very difficult to handle,” Ignacio said. “Things don’t seem to get any easier through this pandemic. It’s just a matter of waiting for this to pass.”

A sense of unpredictability is anticipated with a cancer diagnosis, but Ignacio and Isabel hoped for a community within the oncology floor. While they do have that with the nurses, child life specialists and staff members, they yearn for relationships with other parents who have similar experiences.

“We expected to have that camaraderie with other parents on the unit, but COVID has just made it to where we can only get that connection through social media or Zoom,” Ignacio said. “You just don’t have that right now. Matt got this diagnosis at the worst possible time with COVID.”

While many have adjusted to their new normal during the pandemic, Matt’s treatment regimen has prolonged the adjustment as he is on week 14 of 120 at the time of this article.

“Everything that we do now is trying to find that sense of normalcy for our family,” Ignacio said. “Financially finding that balance, scheduling appointments for Matt and making sure our other kids still have a life outside of Matt’s cancer diagnosis. We can’t just stop living.”

Cancer amidst COVID-19 has given the Rodriguezes a renewed outlook on placing importance on their family. Although they may feel isolated from their community, the time they spend together as a family is now more valuable than ever.

“We enjoy every moment we have with our kids. I hate COVID, but I’m thankful that I’ve been able to have them all home with me,” Isabel said. “We realize every moment that Matt is okay is important, and we’re amazed at everything he’s still able to do. We treasure those moments more than before.”

Parents can help by making sure that children plan accordingly for testing days at school. Find out from your children and the school how they’re doing and the likelihood of not performing well on tests. This will help alleviate fears by pacing preparation for the tests, creating a plan to help kids succeed and encouraging them to problem-solve their worries.

Here are steps you can take to help your child during this stressful time:

1. Ask for help. If your child is especially anxious about test taking, set up a meeting with the teacher and school counselor to come up with a plan to ease fears on test day.
2. Go online and get sample items of practice tests from previous years and, if needed, practice with your children at home.
3. Practice deep breathing exercises at home. Then on test day, they will be able to put these practices into action.
4. Make sure your child gets plenty of rest. Studies have found that people who get eight hours of sleep before taking a math test are nearly three times more likely to figure out the problem than people who stay awake all night.
5. Control your children’s anxiety by making sure they are prepared. Focus on good study habits and the importance of not waiting until the last minute to cram before the test. There’s still time. Also, make sure your child has everything he or she needs going into the test. Even if it’s a new sharpened pencil. Make a check list the night before to avoid stress.
6. Stay away from entertainment as test time approaches. It’s not easy, but your child needs to study and not spend all night watching TV, looking at Facebook^® or being on the computer. You can wait on that until after the test.
7. Help your child keep mistakes in perspective. Everyone makes them and nobody is perfect. As you move closer to tests and studying, use wrong answers as a learning opportunity.
8. Eat right. Make sure your child has had enough sleep, exercise and healthy food. Avoid heavy food or desserts that may upset the stomach. Avoid  high sugar foods that may keep your child up all night and  make sure your child has a healthy breakfast (low-sugar cereal or oatmeal) the morning of the test.
9. Expect distractions. Let your child know someone in the class will have sniffles. Some kid will be banging his pencil on the desk. Someone may be humming. Those kids have their own stress. Just warn your child this is going to happen, but don’t let it be a bother.
10. After testing is completed, create ways to celebrate with your child. What you want to focus on in this celebration is the success of managing their stress, and not whether they passed or failed, which they won’t know for weeks.

Just in time for the holidays a reader wrote in with this question:

“My friend...was told by her grandson’s pediatrician that her grandchildren who are vaccinated should never be around any unvaccinated children. Well, the parents of her other grandchildren do not want to vaccinate their small children…As a result there are no more family gathering with all grandchildren. They have to spend holidays on separate days. My question is: Why would the pediatrician say this? If the children who are vaccinated and the children are not showing symptoms what’s the problem?”

This is definitely a sad and tricky situation and one that we should use extreme care when discussing.

One thing I will say is that no matter what one’s choice about vaccinating is, parents believe they are making the choice in the best interest of their child. Of course, I have strong opinions about how important it is, but this discussion is not for the faint of heart.

There are probably some doctors that would tell you it’s no big deal and you shouldn’t worry about it (I would disagree with them). There are other doctors that would say you should never have your child around children who are unvaccinated regardless of your child’s health (I recognize this is not reasonable in many situations).

Here are the questions to consider:

1. How old is the child? The younger the child, the more vulnerable they will be to infection. They cannot receive protection for chicken pox or measles before 1 year. Older children who are fully vaccinated have a significant amount of protection and they likely encounter an unvaccinated child at school every day.
2. Who isn’t vaccinated? This question is about family members which makes transmission of infectious diseases more likely than if you just walked by someone on the street and were not interacting with for longer periods of time.
3. Can you have an open conversation with those involved? The discussion is clearly more complicated than simple medical advice as it broaches on several tricky areas including family dynamics and vaccination.

The easy (get out of having to make a committed answer) is that there is no one answer to the question. The family should talk with their doctor about their specific concerns and make a decision with their counsel.

Should I stop the blog post there? Not so fast.

Instead, I want to give you a framework for having that discussion with your doctor.

What diseases should I be worried about?

I believe that all vaccines are important, period. But there are 3 diseases that jump to the top of my list when considering this issue:

1. Flu

Flu season is predictable in that it comes every single year at roughly the same time. It is unpredictable in that we never know how widespread it will be and how severe the cases will be when it does come around. Flu is particularly dangerous in babies and they cannot be vaccinated until they are 6 months old. Remember that the flu vaccine isn’t perfect, so I’m not saying that everything’s cool if we all have flu vaccines but it would seem logical to get as much protection surrounding the baby as possible.

2. Pertussis

Pertussis, or whooping cough, is still common and is a very serious disease for anyone who gets it. In children, teenagers and adults it tends to cause a very rough and painful cough that lasts for weeks to months. I know of adults who have had broken ribs because the coughing is so hard. The real danger for pertussis comes in small babies (less than 3-4 months). These babies commonly have spells of coughing that cause them to stop breathing; leading to ICU stays for intubation and unfortunately, death. Babies are vaccinated against pertussis at 2, 4 and 6 months which increases the number of children who are protected with each shot but they go on to get another vaccine at 4 and 11 years as well. So, when are they fully protected? It’s impossible to say. In addition, vaccines are not perfect so even vaccinated infants who are exposed could develop pertussis. Pertussis still occurs commonly in the United States and is generally carried by older children and adults who are coughing but do not know that they have pertussis. Just like flu, having the vaccine does not prevent disease 100% and I still feel that we need to do something better with the pertussis vaccine but again, it would seem logical to increase protection as much as possible.

3. Measles

Measles is another disease that still occurs in the United States. In 2014, there was a record number of 667 confirmed measles cases reported to the Center for Disease Control and Prevention’s National Center for Immunization and Respiratory Diseases (NCIRD). That’s the highest number of cases since measles elimination was documented in the U.S. in 2000. Measles can cause pneumonia and have a higher risk of hospitalization in children under 5. Children receive their first measles vaccine at 1 year of age, but they have no protection from measles until then.

What criteria should I use for being around others?

1. If your baby is under 6 months, use extreme caution. Many babies do not have full protection until after the 6 months shots. In addition, they cannot receive a flu vaccine until 6 months.
2. If your baby is under 1 year, I would also use caution. Your baby cannot be vaccinated against measles or chicken pox until 1 year.
3. After your child is vaccinated at 4 years, they have much of the protection that they need to protect themselves against the vaccine preventable diseases.
4. Babies or children who may not have a normal immune system-such as those with chronic illness or who were born premature deserve extra caution.
5. Anyone with symptoms of illness, especially fever, cough, congestion or rash, should not be around your baby or child regardless of your contacts’ vaccination status.

Can you get a definitive answer about when your baby can be around unvaccinated children? No, but you at least have some information to make an informed decision.

After you’ve discussed your plan with your pediatrician how do you handle the conversation with friends and family?

Here are some thoughts about some things you might say:

1. Our baby/child doesn’t have protection against many very dangerous diseases and we do not feel comfortable having her around people who could spread them to her.
2. Our baby/child has already been through so much, we can’t risk putting her through another medical problem. Especially something that we could have avoided.​
3. The doctor was emphatic that we cannot be out around anyone (especially someone who is not vaccinated or you could leave that out) until __________. (I’m fine with a family placing the “blame” completely on me.)

But too many Thanksgivings end up with huge fights or arguments in front of the kids. The past few months have been especially volatile with an election that could spark opposing sides.

As parents, as hard as it is sometimes, we have to be the grownups. Research from children of divorce shows us that it’s not so much conflicts between adults that are particularly problematic, stressful or damaging to kids, but it’s witnessing conflict without seeing a peaceful resolution.

Whether you are upset over who did or didn’t get in the White House or you are still holding a grudge from a loan that never got paid back, kids need to see us demonstrate the concept of agreeing to disagree while maintaining mutual respect for one another.

We can provide our kids with a good example of learning to listen, genuinely hear, and appreciate another’s perspective even when our ideas may differ. Our unique personal experiences shape our passions, feelings, thoughts, values and opinions. As such, it is impossible for us all to be the same, which is really what would be necessary for us to all agree all of the time. It takes all kinds of people with all kinds of interests and values to make our world work. If we didn’t have such a variety, everyone would be a chocolate ice cream-loving, brussel sprout-hating, mystery-reading , female veterinarian … which means our animals would all be very healthy but our grocery stores would always be low on our favorite treats and the library would have nothing interesting to read since all the books would be about curing sick animals.

Plus, there would also be no turkey on the Thanksgiving table.

So teaching our kids that variety truly is the spice of life because it enriches our experience is critical. At the same time, helping our children understand that even the best chefs make mistakes and use too much of a flavor at times which overwhelms the dish … it’s too spicy … is important too. Sometimes, parents and other grownups are like this when they share their feelings and their passions with others too intensely. We become very protective of our beliefs and opinions, expressing them too loudly and too harshly when we don’t feel heard. Kids really do love it when grownups admit their mistakes. When we are able to accept responsibility for our own lapses in self-control and emotional regulation (scaring or hurting others feelings because we got carried away), we are showing those relationships are important and worthy of mending by seeking forgiveness and reconciliation.

Kids need to see that the important adults in their lives can disagree and still accept, include and love one another.

With young children, consider using ideas/concepts that are familiar, meaningful and relevant to them. Rather than focusing on political, financial, social, or religious issues, you might talk with them about preferences they share with their close friends, as well as things they might disagree about.

For example, “You believe that plain cheese pizza is the best, and you love to go rock climbing. Your best friend loves pepperoni but is afraid of heights and prefers soccer. Your other friend loves cheese, thinks pepperoni is OK, and is bored by everything but video games and Legos. You think pepperoni is gross. “

Who’s right? Is there a right and wrong? Do your feelings about your friends change because they like different things than you do?

The idea you want to help them learn is that everyone’s thoughts, feelings and values are valid and should be treated with respect even when we don’t happen to agree. It’s also important to keep on loving and accepting others who don’t agree with us, even when that same acceptance is not being given in return. Our value does not change just because someone else tells us so. You wouldn’t agree if someone told you your eyes were rainbow colored … that would be silly! You don’t have to agree if they tell you what’s important to you is wrong either.

About the author

Whitney McGee, Psy.D, is a licensed psychologist at Cook Children's. Cook Children's Behavioral Health services provides a broad range of care that focuses on children from ages 3 years through 17, and their families. As part of family-centered care all of our professionals are qualified both through education and experience to work with children who have behavioral and emotional challenges. Our psychiatrists are board certified in child and adolescent psychiatry and our psychologists and therapists are all licensed independently in Texas. Locations include Denton, Fort Worth, Hurst, Lewsville, Mansfield and Southlake. 

To access any of our services, please contact our Intake Department. To expedite your call, please have your child’s date of birth and insurance information ready.

You decide to seek out some information online and you find this:

“Although data to make specific recommendations as to when it is safe for infants to sleep in the prone or side position are lacking, studies that have established prone and side sleeping as risk factors for SIDS include infants up to 1 year of age. Therefore, infants should continue to be placed supine until 1 year of age. Once an infant can roll from supine to prone and from prone to supine, the infant can be allowed to remain in the sleep position that he or she assumes.”

AAP SIDS and Safe Sleep Guidelines

“Heh?”

Hopefully none of us really talk this way, but I have a feeling sometimes it’s close. Doctors have a notoriously bad rap for their handwriting; fortunately, we’ve mostly fixed that with electronic records. Unfortunately, some of us aren’t known for our amazing verbal communication skills, either.

A study released in Pediatrics this week highlighted this fact. The authors surveyed mothers of 4-6 months old babies about the education they received from their doctor when their baby was a newborn.

They asked the mom if they received advice on the following topics: vaccination, breastfeeding, sleep position, sleep location and pacifier use.

All of these seem like pretty basic newborn information. Most doctors would want to cover them during that time frame. They all are included in very specific guidelines with clear instructions for how the American Academy of Pediatrics wants us to educate our patients?

How did the doctors do? The following percentages reflect the number of mother’s who reported receiving correct advice for the respective topics:

1. Does it seem like we’re speaking in a foreign language?

For many cases, the study showed that either the doctors failed to mention some pretty important topics or they weren’t presented in a way that parents understood or remembered.

One of the reasons I love to write is that it forces me to have clear thoughts about the medical issues I deal with every day and to focus on clear strategies for communicating those thoughts to patients. Of course, I’m not perfect. Here are some of the communication mistakes I (and from the results of this study, other doctors) make and some strategies for the way things should go (with help from you of course):

Some people describe the first few years of medical school as being more or less a foreign language study. During those years, medical students learn terms that most people don’t need to know. We use them as a way to communicate with other doctors as we begin to learn from “real” patients in the later years. The problem is we sometimes forget that we can’t talk that way all the time if we want to be understood by our families.

How can you help us while we work to get better?

Don’t be afraid to ask questions or to stop us if you don’t understand. Your child’s health is important to us. We know that you have to understand our instructions if we want to have any chance to help your child stay healthy or get better when they are sick. Ask us to slow down or to re-explain a certain concept again if what we say doesn’t make sense.

2. Have we given you the best opportunity to hear us?

This newborn study is a perfect example of this. A newborn mom is tired and stressed and getting health advice from the nurse, the doctor, their family and the Internet, so what usually ends up happening? We rush right through with the messages that are important to us and hope that mom gets them in 5 minutes.

Thanks for coming in. Good luck, mom!

Other examples are when we deliver bad news or just simply have a baby with an ear infection that is screaming in pain while we get louder and louder to make sure we are “heard.”

How can you help us while we work to get better?

Some are easier than others. When we’ve delivered bad news, there’s probably nothing either of us can do to help in that situation. But we should definitely slow down and wait a minute to let you think before we plow through into “next steps.”

If your baby is fussy and you can’t concentrate, feel free to ask if a nurse could come help for a second while we talk. Even if the baby stays in the room, just having them out of your arms makes it easier to listen. During those newborn visits when you are sleep deprived, ask for resources that you can take home and read when your mind is a little more clear (if that every actually happens for any of us with newborns).

3. We try to cover everything, but did we focus on what you want to learn?

This has another medical school analogy. Some people refer to the first few years of medical school as “trying to drink from a firehose.” There is so much information coming so quickly, you have to learn how to decide what is important enough to waste brain space on and what can be discarded (or “Googled”) later. So, when it comes to giving advice, we assume that you can do the same. The other assumption we make is that you actually care about the things that are important to us.

How can you help us while we work to get better?

First and foremost, please bring a list of questions. This helps us to focus on the things that are important to you, which are the things that you are going to remember anyway. As I get to know my “listers” better, I tend to grab (nicely) the list out of their hands and start writing the answers down (in ugly doctor scrawl) as we go along.

This is another time when asking for resources can be really helpful. Ask us to highlight or point out sections that are related to what you have talked about in the visit. Now, for this strategy to work, the resources have to come out of the diaper bag before they get formula and other baby fluids spilled on them - better yet, maybe they can just be pulled up on your phone …

I work hard to avoid these mistakes. But as I said, I’m not perfect. Communication is vital between a pediatrician and a parent. In the medical community, it looks like we have a lot of work to do.

Fortunately, we have some great examples at Cook Children’s to learn from.

But we can all get better with your help and feedback.

“Prom, graduation and end-of-the-school-year parties are exciting times for teens,” said Lisa Elliott, Ph.D., licensed psychologist and clinic manager with Cook Children’s Denton Behavioral Health. “Parents have a right to know their teen’s plans and to find out whether alcohol or drugs will play a part.”

Having discussions with your teen about drinking and sex can be difficult, so don’t wait until he or she is slipping into formal wear. Let your son or daughter know that safety and trust are very important to you and you want him or her to make smart decisions.

“As teens firm up their prom plans, parents should get a detailed itinerary of exactly where they’ll be throughout the night and get any emergency numbers they might need,” Elliott said. “This includes the numbers for adults in charge of after parties or post-prom activities. Parents and teens need to be informed, and the more informed you are, the better! Teens can create safe, happy, lasting memories just by opening up the dialogue and making smart plans."

Elliott suggests the following checklist to make sure your teen’s prom is memorable for all the right reasons:

1. Get those digits. This includes the numbers of a friend’s house or the after party at a local venue. Make sure you have any contact numbers and addresses you might need. Make sure the cell is charged up for the night.
2. Know the code. Let your teen know to call you at any time, especially if he or she is in an uncomfortable situation. Decide on a code word or phrase ahead of time so your teen won’t be embarrassed if he or she needs to call.
3. Offer street-smart tips. This could be the first “adult-like” event your teen attends without your presence. Talk about things that can happen – from getting a wallet or cell phone stolen to having a drug slipped in his or her drink – and discuss what to do if the teen makes a bad choice to drink or experiences a problem.
4. Play the name game. Know who your teen will be with. If your teen has a date, call his or her parents and talk about your children’s plans for the night so you will all be on the same page.
5. Take driving out of the equation. Many teens may want to drive themselves to the prom, but hiring a limo can be a great way to keep your teen from getting behind the wheel and make the prom more memorable. If your teen is going in a group, ask the other parents if they would be interested in splitting the cost. If your teen does drive, remind him or her to wear a seatbelt and to not get in a car with anyone who has been drinking.

I don’t have to look at a watch to know when it’s time for lunch. At around 11:30 a.m. my stomach starts to grumble. I’m ready to eat.

My gut kicked in once again on a Tuesday when my phone rang at 11 in the morning. It was my son’s school. Trouble.

The school nurse, who I have become all too familiar with, was on the line. She told me “Mr. Jack” had bumped heads with another little boy during a game of tag. Jack bled a bit from his mouth, his gums were swollen and his left front tooth was loose. He wants everyone to know that he didn’t cry.

Overall, he was OK, but now my kindergartner needed to go to the dentist to get checked out. Only one problem – I didn’t know the name of his dentist, what her practice was called or the phone number to reach her. I guess technically, that’s three problems, but you get the idea.

My wife flew to Washington D.C. over the weekend for work. She makes this annual trip and during that time I realize how helpless and hopeless I am. As a product of a single mother, I also tend to make more calls to my mom than normal just to say thanks.

As I write this, my wife’s on her way home, but here’s a quick overview of how the two men in her life fared while she was away:

Saturday – I totally caved and bought Jack unnecessary toys that I would have said no to if I had my wife there to back me up. Honestly, I didn’t want to hear him complain. Wimp. Not him. Me.

Sunday – We had cereal for breakfast, a few chicken nuggets from the golden arches for lunch and a flag football game that afternoon. Then that evening, Jack totally ratted me out to his grandparents at a dinner they made for the two bachelors. “I’m starving,” he said. When asked why, he told my wife’s parents how little he had eaten that day.

Monday – We had cereal for breakfast and dinner. That evening, we went out for Jack to work on his bike riding skills. There’s a challenging hill near our house that he’s had trouble conquering. With his helmet safely on, he asked if I would catch him if he fell. I told him I would do my best. He aced the hill. I strategically cut down sidewalk to be there for him as he rounded the corner. The only problem was that he didn’t round the corner. His momentum took him off the path and face first into the grass. As he lay motionless, I hate to admit this, but my first thought was, “His mom is going to kill me!” Jack was OK. Thank you God. He hurt his nose and his knee was scraped up a bit. He cried (don’t tell him I told you), but he was Ok overall. At least physically. That night he had a nightmare that I’m pretty sure was because of the fall and probably new found trust issues with his father.

Tuesday – We’ve covered it. But one thing I really do want to point out in all seriousness, dads know your emergency contact numbers and know the numbers of everyone you may need to call just in case.

Wednesday – Mommy’s coming home! My son can’t wait. He told me this morning that he was going to give her a big hug as soon as he saw her. Me too. 

I, and I’m sure many others who care for children, were excited by the news. It was with great interest that I read the news article and began to examine the story more closely. The news while exciting deals with a relatively small number and specific population of children.

The study examined obesity rates in pre-school children, age 2-4 years old whose families received WIC assistance (The Special Supplemental Nutrition Program for Women, Infants, and Children). Not all of the states submitted information. Of the 41 participating states, 18 states showed modest declines in the number of obese preschoolers from information collected from 2008-2011. The remainder of the 41 states showed no change or even increases in obesity rates.

The challenge is understanding what this information means and placing it in the proper perspective. Experts in the field of childhood obesity believe the positive numbers reflect changes in the WIC program beginning in 2008. The program was changed in an effort to increase fresh fruits and vegetable purchases as well as other health options such as whole grains and low fat foods. Additionally, encouragement of breastfeeding is thought to help contribute the improvements.

The news validates the central importance of healthy eating in weight management. I believe that fresh ingredients and home preparation of meals is a major key in overall health and weight management. I have slowly continued reading the book, Salt, Sugar, and Fat, and am increasingly convinced of this belief.

As discussed in the article, challenges remain. One in eight pre-schoolers remain obese. And unfortunately, the likelihood is high for these children that obesity will persist into adulthood.

For more information:

• Cook Children’s Endocrinology and Diabetes Program
• Obesity where we live
• The Center For Children’s Health
• Checkup Kitchen
• Overweight and Obesity
• Keeping Portions Under Control
• How Can Families Be Healthier?

About the author

As a self-described ‘techie,’ Joel Steelman, M.D., has a keen interest in the wise use of technology to improve medical care. Since 2001, he has helped implement electronic medical recordkeeping in two endocrine practices. He still loves to write, and he is a regular contributor to the Physician Perspective page on the Cook Children’s Web site.

Turner syndrome is a common genetic condition occuring in 1 in every 2,500 girls born. It is caused by missing all or a portion of one of the X chromosomes. The condition varies in severity but has physical and psycho-educational impacts.

Care of the girls with Turner syndrome is an integral part of the practice of the pediatric endocrine group at Cook Children’s. The majority of girls affected will have short stature and early failure of the ovaries. Growth hormone treatment is prescribed and monitored by pediatric endocrinologists to treat short stature. The task of monitoring puberty and timing of estrogen replacement is equally important to insure overall health.

As I said, new insights were gained by me at this meeting. I have cared for girls with Turner syndrome from infancy to adolescence. The concept of transition medicine is a growing, important areas in the lives of both of pediatric physicians and the children treated by us with chronic medical conditions. The medical treatments offered currently, have led to vastly improved life quality and long life expectancy.

A new challenge has emerged for physicians, families and emerging adults with a chronic condition – how to live life with the unique challenges of their particular diagnosis. Learning from experiences in education, employment and health shared by young adult women with Turner syndrome during Q&A in my talk was very enlightning.

I was very pleased to spend some tiem at this year’s meeting and learn more about the society. The Turner Syndrome Society, like many other organizations devoted to support and advocacy for a specific condition, provides a forum for families and women with Turner syndrome throughout the stages of life. The education and social support provided by this organization at the national meetings is admirable, and the atmosphere of learning can only benefit girls and women with Turner syndrome in the future.

About the author

As a self-described ‘techie,’ Joel Steelman, M.D., has a keen interest in the wise use of technology to improve medical care. Since 2001, he has helped implement electronic medical recordkeeping in two endocrine practices. He still loves to write, and he is a regular contributor to the Physician Perspective page on the Cook Children’s Web site.

Did you know the beginning of April marked national public health week? Probably not. The observance which began officially in 1995 doesn’t garner much in the way of public attention. Still, it serves to highlight public health achievements as well as talk about ongoing public health issues.

Many of the numerous accomplishments of public health are now considered basic services not recognized for the benefit they have given us all in health improvement. The newborn screening program was one of the accomplishments highlighted this year. This program has in particular greatly impacted my specialty of pediatric endocrinology, and I think it is important to acknowledge its important place in public health history.

Every year, newborn screening efforts test nearly every baby born in the U.S. for serious health conditions. Early detection of these conditions allows prompt medical treatment and potentially prevents disability, suffering, and death. In particular, testing the 4 million infants born every year for congenital hypothyroidism costs $5 per newborn and is estimated to prevent 160 cases of intellectual disability associated with untreated hypothyroidism.

I’ve written in the past about congenital hypothyroidism. The condition refers to a specific type of hypothyroidism diagnosed in newborn babies. This serious condition occurs in roughly 1 in every 4,000 newborns and can have devastating effects if not detected and promptly treated. Eighteenth century medical literature described the mental retardation and physical effects of untreated congenital hypothyroidism, cretinism. But only in the last 30 years have doctors been able to detect these issues prior to birth, allowing for parents to be prepared and physicians and family members to lay out a plan for the child’s future.

The Texas state newborn screening for congenital hypothyroidism has been active since 1980. It is estimated that 120-150 newborns in Texas with hypothyroidism are identified annually by screening. The program is a cornerstone in Texas public health and continues to grow. Today, the program tests newborns for 30 life-threatening issues including sickle cell disease and cystic fibrosis. Congenital adrenal hyperplasia screening represents another important life-threatening condition with pediatric endocrine ties that are screened by the state.

There are many other accomplishments in public health largely unrecognized by us. Thankfully, the U.S Centers for Disease Control & Prevention has compiled a list of the 10 great public health achievements in the 20th century.

Many other Cook Children’s specialties besides endocrinology rely on newborn screening to identify at risk babies early. Many of the conditions tested by newborn screening are rare metabolic conditions. The metabolic genetics program offers evaluation and treatment of these inherited metabolic conditions to help families understand and cope with their child’s diagnosis. A visit to that program can help with a more accurate diagnosis and appropriate treatment, while also helping families determine the best short- and long-term care.

About the author

As a self-described ‘techie,’ Joel Steelman, M.D., has a keen interest in the wise use of technology to improve medical care. Since 2001, he has helped implement electronic medical recordkeeping in two endocrine practices. He still loves to write, and he is a regular contributor to the Physician Perspective page on the Cook Children’s Web site.

I was immediatley interested when I chanced on a recent radio interview with the author, Michael Moss, who has written a new book about the inner workings of the processed food industry. The book deals specifically with the reasons that these companies use three key additives – salt, sugar and fat – in the processed food they create and market.

The term processed foods sounds somewhat sinister, but some of the ways that food is processed such as pasteurization or freezing are quite beneficial to people for both health reasons and convenience. The primary goal in most processing of foods is creation of a food product that is near ready to eat and is stable on the shelf or in our homes for a long period of time. This particular goal and the goal of making tasty processed foods according to Mr. Moss is where the problem begins.

In the book, Moss interviews food scientists in many of the large processed food companies. These scientists are tasked with making tasty food products that apeal to a large group of people. Moss describes the use of the three key additives to mask odd or bitter flavors that develop during manufacturing and to hook consumers on taste.

Moss argues that company pressures to create new appealing snacks, grow market share and improve profitability often result in unhealthy foods that contribute to the U.S. and global obesity epidemic.

The interview concluded with the debate about what steps can be taken to reduce these activities and make healthier foods. The debate no doubt will continue between different philosophies of strict government regulation and independence of consumer choice.

I’ve downloaded the eBook and look forward to learning more and examining different viewpoints. In the meantime, my family and I will continue to see fresh ingredients and discover new recipes.

More information is available if you are interested with links to the NPR interview and the book.

Diagnosis through discussion

For a pediatric endocrinologist, getting a complete medical history of the child is the important first step in arriving at a diagnosis. Next, by asking basic questions such as:

• When did you first see signs of puberty?
• How rapidly are you seeing changes of puberty?
• What specific changes of puberty are you seeing?
• Is your child growing too fast?
• Does your child have any other health problems?

The answers provide important clues to any underlying causes of a child’s precocious puberty.

Children with a history of neurological symptoms such as headaches or changes in vision cause concern for puberty problems that may be coming from within the pituitary gland or brain. We’ll ask if the child has access to birth control pills, estrogen creams, or testosterone creams to see if hormone exposure is the culprit of a child’s precocious puberty.

We also look at diet and clues: Phytoestrogens (a compound found in plants that can mimic the effects of estrogen) eaten as part of a high soy diet may lead to premature breast development. Obesity from too many calories can lead to early pubic hair and body odor in some children.

Careful tracking of height and weight on a growth chart is the cornerstone in the physical assessment of precocious puberty. Seeing rapid or even subtle changes in growth patterns can indicate the need for immediate intervention.

A thorough skin examination sometimes reveals the tell-tale sign of Café au lait spots (shown above) that we know are linked to two conditions, Neurofibromatosis and McCune-Albright syndrome. Both of which can spur on precocious puberty.

Diagnostic testing

After taking the child’s medical history and physical exam, next comes medical testing that includes blood work, imaging studies, or other special medical procedures.

A bone age x-ray (example on right) is perhaps the most useful test in helping to evaluate the progression and severity of precocious puberty. The bone age study looks at the appearance of the growth plates in the hand to see if the bones have matured earlier than they should.

A measurement of hormone levels in the blood is used to help confirm early theories on the cause of early puberty as well as evaluate its severity. Hormones measured in testing could include any of the following:

Androgens – hormones made by the adrenal gland that cause pubic hair and body odor

1. Gonadotropins – hormones made by the pituitary that activate puberty
2. Thyroid hormone – thyroid hormone has a role in regulating puberty
3. Estrogen – the female hormone responsible for breast development
4. Testosterone – the male hormone responsible for pubic hair and body odor

Sometimes, specialized stimulation testing is needed to help further evaluate our suspicions. We order these tests when a child is in early onset of precocious puberty and blood hormone levels don’t show a definite pattern or in cases where all the information combined fails to give a clear enough picture. Stimulation tests involve more comprehensive blood work combined with IV medications to stimulate temporarily higher hormone levels. Stimulation testing can help in assessing adrenal function to rule out subtle forms of congenital adrenal hyperplasia as well.

Radiology scans such as an MRI of the adrenal glands or ultrasound of the pelvic area may be prescribed to determine the size of the adrenals, ovaries or testes. An MRI brain scan will indicate if the hypothalamus and pituitary gland are normal and often occurs at the end of the testing process when confirmation of a preliminary diagnosis is required.

Treatment

Once the source of puberty is identified, the options for treatment are then discussed. Sometimes not treating precocious puberty is an option. This happens mainly during cases of idiopathic central precocious puberty. After careful consideration of the risks and benefits, some families simply wish to allow nature to take its course and not intervene.

Today, we are fortunate to have medicines called GnRH (Gonadotropin-releasing hormone) agonists that are effective treatments for the majority of children. They work specifically to stop the progression of central precocious puberty by telling the pituitary gland to ignore the GnRH signal it is receiving from the hypothalamus and tells it to lower or stop the level of sex hormones it is releasing. This countermeasure will also stop bone maturation and help the child reach his or her anticipated adult height. These medications are given by monthly injection or by an implant under the skin.

Helping your child to cope

A diagnosis of precocious puberty and its imposing physical trauma can be emotionally unsettling for any child. The good news is that with the right treatment, both physically and emotionally, a youngster experiencing early puberty can enjoy a normal, happy childhood and grow into a well-adjusted adult.

No child likes to be viewed as ‘different’ than their friends, so it is important for every young person to understand that puberty is a normal process in life that everyone will experience—some earlier than others. As children develop self-esteem and behave according to how they are treated, pay close attention to your child’s interactions with others. If you sense or know that your child is being teased or bullied about the changes in his or her body that puberty has initiated, it’s important that you try to get him or her to talk to you or another trusted adult or medical professional who can offer sound advice on how to cope with what’s happening.

All children need to be taught how to care for their personal hygiene and with this condition, they may also need to change sizes in clothing more frequently. It’s also important to make other adults in your child’s life aware that they should treat your child according to his or her real age, no matter what age they may look like.

Previous articles:

Precocious Puberty (Part 1)

Precocius Puberty (Part 2)

About the author

As a self-described ‘techie,’ Joel Steelman, M.D., has a keen interest in the wise use of technology to improve medical care. Since 2001, he has helped implement electronic medical recordkeeping in two endocrine practices.