5:30 a.m. – Annie wakes up, the earliest of everyone in the house. She starts chatting, singing and reading books in her “big girl bed” – a tent that goes around the mattress with special lights. “She wakes up like she’s already had two cups of coffee,” Courtney says.

6 a.m. – Annie goes to the potty. She has been potty trained for more than a year. Then she heads to the kitchen for a gluten-free and dairy-free breakfast. Annie eats very healthy food. The more consistent and predictable her day is, the happier she is.

6:30 a.m. – It is time for Annie to get dressed. She doesn’t like having her hair brushed, but she loves brushing her teeth. She compliments herself on how good her outfit looks. Her “shoe house” is what she calls the shoes by the back door, and she picks out a pair before getting her backpack.

7:30 a.m. – Courtney takes Annie to the cardiologist – the longest appointment. Annie gets very upset about anything medical-related, so Courtney and Spencer, Annie’s father, let her know the day before appointments. Courtney also takes Averie, a TCU premed student, to appointments. She serves as their personal child life specialist; while Courtney fills out paperwork and has serious conversations with the doctor, Averie helps Annie.

7:50 a.m. – As Courtney pulls into the parking garage, Annie starts getting fussy and anxious. “Copy mama,” Courtney says. “I am brave. I am safe. I will be with my mama. I will be with Miss Averie. My doctor is my helper.” Annie repeats everything Courtney says, and it calms her down.

7:55 a.m. – Courtney, Averie and Annie walk into the doctor's office. Courtney brings a medical calming kit she created – a special bag filled with music, books, pictures and interactive educational toys. Annie is now able to participate in the appointment and feels empowered.  

8 a.m. – Annie’s name is called, and a tech walks them to a room to check her vitals. “With kids, it is important to gain trust and rapport with the tech, especially for Annie since she has a lot of medical anxiety, and we have worked hard to get through it,” Courtney says. Courtney asks Annie to say her name to the tech, then Courtney spells the tech’s name for Annie. They play a game with weight and height checks as Courtney asks, “How big and tall do you think mommy is?” Annie does great and they celebrate with her.

8:15 a.m. – Back in the room, Annie gets upset again, and Averie pulls out the calming kit so Courtney can go to the restroom. The nurse enters and introduces herself to Annie before prepping her for an EKG, which she had not had in a year. Knowing the number of leads and wires can be a problem, Courtney places a sticker on herself and says, “See? Easy peasy!” It is a struggle, but Annie gets through the procedure as she counts the stickers in French. They celebrate again after the EKG.

9 a.m. – Now it’s time for the echocardiogram – the hardest part because it is in another room. This is an important test to see Annie’s heart at baseline and to check for pulmonary hypertension. With an echocardiogram, the patient must remain still and calm so the technician can capture all the angles and ensure the heart rate and blood pressure don’t’ affect the results. 

Annie sees the table with paper on it and thinks it means she is getting a blood draw. “Up to this point, she hasn’t had any screen time,” Courtney says. “We save it for this moment – like the Hail Mary.” Courtney lies on her back next to Annie, and they snuggle. They sing songs from “Frozen” together, and the nurse laughs as Annie quotes the entire movie. “It’s so fun to watch Annie break people’s expectations of her,” Courtney says.

9:30 a.m. – Robert Loar, M.D., Annie’s cardiologist, enters the room. Annie was one of Dr. Loar’s first patients; Courtney began seeing him while she was pregnant. Dr. Loar is a TCU horned frog, too, and they discuss life before diving into medical updates. “He genuinely cares for Annie,” Courtney says.

Dr. Loar says Annie’s pacemaker has eight years of battery life left. He and Courtney then discuss heart pressures and anatomy; he says her repair is holding up beautifully and is exactly what he wants to see. 

“Annie’s story is so extreme and miraculous,” Courtney says. “Annie’s journey is still being used for good to help treat other children and give parents hope.”
Annie says, “Dr. Loar, I love you,” and he responds, “Annie, I love you too.”

Courtney packs the toys and celebrates with Annie again. Annie says, “We did it. I was brave. I was safe and we saw the doctor.” This is a big moment for Courtney, who has been helping Annie process emotions as a successful coping skill.

10 a.m. – Courtney takes Annie to KinderFrogs, a school program designed to prepare children with Down syndrome for kindergarten. Annie walks herself into the classroom, hangs up her backpack and sits in her chair. “Annie loves everything about school so much and has never missed a day – just leaves for doctor’s appointments here and there,” Courtney says.

2:45 p.m. – Courtney and Russ, Annie’s baby brother, pick up Annie from school.

3:15 p.m. – Courtney, Russ and Annie pick up Wells, Annie’s older brother, from school.

3:30 p.m. – Annie plays at home. Courtney is intentional with screen time, so they try to avoid TV and use it only as a last resort. They play outside, in the playroom or in their bedroom. Annie does a great job playing by herself or with her brothers as she becomes more independent.

6 p.m. – Dinnertime! Annie’s diet is clean and nutritious, which Courtney says provides tremendous health benefits.

7 p.m. – It’s Friday night, which means games with the family. They have found games Annie enjoys playing with them. “It is so fun to push her to do more, include her and see what she can do,” Courtney says.

7:45 p.m. – Annie chooses her pajamas. “No mommy I do it,” she says.

8 p.m. – Spencer lies with Annie until she falls asleep.

By Alexis Pechek, Unit Secretary, NICU

Luciana Marie entered the world in February 2021, right after an ice storm blanketed Fort Worth. Her birth brought with it an “at birth diagnosis”- we had no prior knowledge of her heart defect or any markers suggesting Down syndrome during pregnancy. Our first glimpse of Luciana filled us with awe, but also a sense that something was different. Babies are often swollen after birth, so we initially dismissed it as that. However, the next morning, we received her diagnosis of Down syndrome and a heart defect, which left us overwhelmed. We struggled to process this unexpected news and question whether we had somehow failed her during the pregnancy. I, as her mother, felt like I had let her down when I was to protect her.

We mourned the child we envisioned and embraced, with open hearts, the child we didn’t know we needed.  Grieving was a necessary part of our journey, and we realized there was no right or wrong way to navigate it. But in the midst of our grief, we began to transform into parents we never thought we could be, thanks to Luciana. Everything we had heard about Down syndrome had been colored with negativity, and we couldn’t help but fear what the future held. But we resolved to turn things around because Luciana, like all individuals with Down syndrome, is inherently worthy.

Luciana's resilience, patience and kindness

Luciana has left an indelible mark on our lives. She has taught us resilience, patience, kindness, and above all, how to be fighters, just like her. We aspire to create a world where individuals with Down syndrome are treated equally and inclusively, where access to care, resources and support come at ease and acceptance is the norm. Luciana ignited a passion in us to advocate for her and show the world her beauty. After all, isn’t that what every parent wants for their child?

As Luciana grows, we wonder about her limitless potential. There are many misconceptions about individuals with Down syndrome, but there are also countless examples of them achieving greatness, whether as athletes, models, actors, public speakers, or students pursuing higher education in college. If we limit their opportunities, how will we ever discover what they are truly capable of or witness them thrive in life?

Raising a child with a disability is undeniably challenging, but it’s also profoundly rewarding. There’s no rulebook for parenting, especially when your child has a disability. We’ve learned to navigate this journey with the help of families who’ve walked this path before us and supportive organizations here in the Dallas-Fort Worth area, such as Down Syndrome Guild of Dallas, Down Syndrome Partnership of North Texas (DSPNT), and Hope Story. Cook Children’s Medical Center has also played a crucial role in Luciana’s care.

To the parents who’ve just received a new diagnosis, we understand the fear, confusion, and uncertainty that can engulf you. I ask you to take it one day at a time and cherish your baby first, the diagnosis second. Don’t miss out on the joy of these precious early moments. Reach out to local Down syndrome organizations, seek support from friends and family, and connect with those who have traveled this journey before you. Support that has your back, guides you to resources, and advocates for individuals with Down syndrome can make all the difference.

What health care workers should know

Health care workers can also be crucial allies for individuals with Down syndrome and their families. They can advocate when needed, ensure proper care, and prevent anyone from slipping through the cracks. Volunteering or donating to local Down syndrome organizations is a tangible way to contribute and recognize their worth.

In addition, using person-first language is essential. It’s “Child with Down syndrome” or “Individual with Down syndrome”, not “Down syndrome Child” or “Downs Baby”. A disability is something they have, not who they are. We’ve also personally learned to eliminate the use of the dreaded r-word from our vocabulary. This word, even when not used negatively, is offensive and hurtful, implying that people with Down syndrome are less competent. The words we choose to describe people shape how we treat them, and changing out language can signal a shift towards greater inclusivity.

Luciana, whose name means “light” and “glowing soul”, truly lives up to her name. We chose this name before we even knew about her diagnosis, something tugging at us that she would need a strong and special name. Love radiates from every inch of her, and if you ever have the privilege of her embrace, you’ll carry it with you, forever. Luciana has been a fighter since day one, and nothing will deter us from advocating for her every single day. While this journey wasn’t what we expected, we know for a fact, it was undoubtedly what we needed in our lives.

by Heather Duge

Two days after Abbey Bell delivered her baby girl, Kitson, she turned to a Down Syndrome Facebook page for advice.

That is where she found Courtney Morey – a mom who would understand everything she was about to go through. Courtney’s daughter, Annie, also has Down Syndrome and underwent heart surgery at Cook Children’s.

“After finding out Kitson would need heart surgery, it felt like a lot,” Abbey said. “I was in shock and very worried."

Mending the Tiniest of Hearts
Kitson’s AV canal was open and would need to be repaired. The Bells are from New Mexico and Abbey wanted to find the best place for Kitson’s surgery. Abbey said she started praying and gave it all to God.

“It felt like we were battling all these unknowns and the pieces needed to come together,” Abbey said.

She ultimately felt like God was leading her to Cook Children’s. After her first interaction with the surgeon, she knew it would be the right place. The next few months focused on Kitson’s weight gain, and at five months old, she was ready for surgery.

“Passing my baby off to the medical team was the hardest thing I have ever had to do,” Abbey said.

Four hours later, Abbey and her husband saw the medical team wheeling their tiny baby through the hallway. A huge wave of relief came over them but seeing her hooked up to all the machines was hard.

“You can’t prepare yourself to see your child like that,” Abbey said. “The staff knew what it was like for us as parents and they were amazing to us.”

For the next several days, Kitson remained sedated, but Abbey said she began responding in ways that made them certain she was there.

Caring for Kitson in Special Ways
Slowly as more tubes and wires were removed, Abbey had her baby back. During the hard moments in the Cardiac Intensive Care Unit, Abbey remembers pediatric cardiologist Susan Davis, M.D. being there for her.

“I was exclusively breastfeeding Kitson, so it was hard,” Abbey said. “But Dr. Davis who has a nickname of ‘mama bear’ in the CICU came in and comforted her in all the right ways. It was the sweetest moment to see a doctor take the time to rock my baby’s bed back and forth.”

Kitson recovered ahead of schedule and moved to the stepdown unit. With the help of child life specialists, Abbey learned how to hold her post-surgery. Kitson even worked on tummy time. But on day four, Kitson developed pulmonary hypertension. She would need more time to recover.

For the next five days, Kitson’s care team worked on the right treatment plan for her lungs. Abbey said the daily interaction with the doctors was something she had never experienced. 

“It’s very rare that doctors feel more like friends,” Abbey said. “When they came into the room, we felt heard more than we ever have before. They knew Kitson not just as a patient but as a person.”

With Abbey’s husband back home to care for their other two children, she said many days felt daunting being cooped up in a hospital room and not knowing how long they would be there. But it was people like Ginger Brewer who made all the difference.

“I’m a runner and felt stuck inside,” Abbey said. “Our nurses Ginger and Madison told me I needed to go get some sunshine. When I came back in, Ginger was still holding Kitson. It meant so much to me.”

For Ginger, holding Kitson was the highlight of her day. 

“To say I was excited when I had Kitson as a patient would be an understatement,” Ginger said. “Her parents loved on her literally all day and night. So when Abbey stepped outside to take a break, I was so thrilled and encouraged her to stay away as long as she needed. I was honored to care for Kitson and her family during their journey at Cook Children's. The experience filled my heart and reinforced why I do what I do.”

Back Home and Thriving
Kitson’s lungs improved, and they made the trip back home to New Mexico. Abbey says she was worried about being home since they live in the country, but the doctors said she could contact them with any questions.

“Even though we’re back home now, they told me Kitson is a forever patient at Cook Children’s,” Abbey said. “I have contacted them several times with questions, and they have been so helpful and reassuring.”

Now eight months old, Kitson is thriving and back to her spunky self. Abbey says she is hilarious and wild – “a ball of fire.”

“Kitson is our warrior baby,” she said. “She is such a joy in life that we didn’t know we needed.”

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

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

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

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

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

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

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

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

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

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

Clinic Overview

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

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

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

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

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

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

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

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

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

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

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

Betzi’s Experience

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

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

Here are highlights from their visit in November 2022:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Libby’s story

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

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

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

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

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

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

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

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

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

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

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

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

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

Sophie’s story

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

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

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

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

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

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

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

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

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

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

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

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

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

Dr. McGehee, seen here with his daughter Brigid, became a stepfather of two younger girls 15 years ago, after his own four children were nearly grown and out of the house. He feels like the commitment he keeps to his wife, Pam, is what makes him a better father of a strong family.

“I know, to some, it sounds like it defies common sense to say put the children second,” Dr. McGehee said. “But, I think you have to have a strong marriage and a strong bond between the husband and wife. From there, everything grows from the love in that relationship. If the marriage is solid, the kids will benefit.”

That strong relationship between spouses will also be needed, Dr. McGehee said, with the extra challenges that come from being a stepparent.

Children of divorce often have emotional issues, sometimes of abandonment and sometimes of anger against the new father. Dr. McGehee said the parents need to have a unified front in dealing with their kids.

“You have to eventually find that place where you trust the stepparent and their objectivity,” Dr. McGehee said. “The stepparent can look at things with fresh eyes and without some of the emotional entanglement that may be there with the biological parent and the children. Hopefully, the biological parent will find that objectivity helpful.”

And then there’s one more relationship that Dr. McGehee feels stepdad has to at least attempt to make – with the biological dad.

“We have something in common – the relationship with the kids,” Dr. McGehee said. “I would hope that we are both trying to love and nurture the child. You have to try to get along with each other, eventually you will have things like graduation and weddings to attend together. You may not ever be friends, but you should at least be colleagues in raising a child. All the parents involved should have the same goals for the child – making them a happy, healthy and successful person.”

“I don’t see how that could be possible. You see, William doesn’t know the difference. You think it would be easier because you are comparing him to a typically developing child. But to William, life is good. As he becomes older, sure he will see some differences, but that doesn’t mean it will be easier for him, you can’t predict the future and you are not him. I think what you mean is that it would be easier for you, me – anyone in his life. It would make things normal or typical for everyone else – And besides, have you seen normal lately – how scary can that be?”

William has changed people’s lives. He has made a difference in the 10 short years that he has been here. I’ve watched him soften people’s hearts, who before knowing him would have never embraced a mentally challenged child. I’ve watched him change people’s perceptions of children with disabilities. I had a helper for one semester, picking up William from school at Kinderfrogs, taking him to child care, and then staying with him. In one short semester, Susan changed her entire college plan. She was no longer going to go to University of Texas for journalism, but now she attends UT and changed her major to special education with a minor in deaf education. She had learned sign language with William and wanted to pursue working with special needs children and sign language.

I’ve watched William teach his brother and sister’s compassion, patience, and various life lessons that most parents only dream of ever helping their children experience or learn. He has made his siblings better teenagers, and given them the forethought to be better adults. They in turn impact those around them and change other’s perceptions. I challenge you to find a day that William didn’t positively impact someone, somewhere. He changes the world, one day at time, one person at a time. If William didn’t have DS, then he wouldn’t be William and I want my William; the good, the defiant, the hard-headed, jovial, the loving twerp that I have embraced since day one. To change him, would require undoing ALL the good he has done. To change that single chromosome would alter his identity. Who am I to decide to undo all the incredible things he has done and will do? I’ll take the hard work, I’ll take the nay-sayers, and I’ll take the medical risks (even leukemia). It’s all worth it to me. I was blessed to be given the opportunity to be William’s mom and my personal thought – God doesn’t make mistakes – even when we do.

I believe in these children, in our children. I believe that they are very much needed in our society and in our lives. Their spirit is contagious. Their presence is needed to put life into perspective more than we care to admit. Simply taking a moment to look past the disability allows us to see all the value and worth they hold inside and what each one of them brings to life. These children are incredible. (Sometimes I really wonder who truly has the “disability.”)

So, to answer the question asked by my oldest son and by others, would I take away that one extra chromosome? Absolutely, positively not! William is perfect the way he is. He is William and I love him.

My name is Barbi Beard-Wolfe and I am incredibly proud to be William’s mom! and I love his extra chromosome!

About the author

Barbi Beard-Wolfe is the Parents as Partners coordinator for Family Services at Cook Children's. Parents as Partners program is a family-centered care initiative, designed to work with families who are being cared for at Cook Children's. This program provides support to patients and families and strives to improve the safety and quality of the care provided. Learn more about the program here.

We know these familiar names from Sesame Street like they are family members. Maybe, because they all had a hand in raising most of us.

But now a new character has brought excitement from families of children with disabilities and health care professionals alike.

Julia is an orange-haired girl with autism, who is a friend of Elmo’s. The new character will help children get a glimpse of the life of a child with autism and explain why she gets upset over loud noises or memorizes the words to so many songs.

“I think this is really great,” said Barbi Beard-Wolfe, the Parents as Partners coordinator at Cook Children’s. “Introducing Julia to kids at an early age teaches children different approaches to ways of life, interaction with others and that people with disabilities are more alike than different. People who have autism or other challenges have value and can have a meaningful life like typically developing people.”

Beard-Wolfe believes by including Julia as a character, Sesame Street is teaching children how to have social interaction with others and hopefully prevent stereotypes.

“Hopefully, by kids growing up with this character, they will think a child with autism or another disability is OK instead of weird and they will learn to enjoy and see the value in their differences.”

Beard-Wolfe has a child with Down syndrome and is happy that kids may learn "more alike than different approach.”

Denise Coover , a clinical social worker with the Psychology department at Cook Children’s, believes Sesame Street may help not only children, but adults learn more about children who have been diagnosed with a Autism Spectrum Disorder.

“Sesame Street has done a spectacular job celebrating children who have this diagnosis as special, unique and wanting the same things as children who are developing in a typical manner. I read that Sesame Street chose Julia to be a girl, rather than a boy to bring to light that although the disorder occurs more frequently in boys, girls can also have the disorder,” Coover said. “Showing other children how to have empathy and to recognize that children on the spectrum see the world in the most amazing way. They will teach you to find joy in things in ways you would have never imagined. One of my favorite things about children on the spectrum is that they really are present in the moment, not in the past and not in the future – they live right in the here and now. “

Coover believes Sesame Street could help children to recognize all the unique and fun experiences they will have when they befriend a child on the spectrum, as well as offer insight into hand flapping and other behaviors that may be difficult for children to decipher and note that we all have things we do that make us stand out.

Some children jump when excited, some run in circles and some flap their hands. Who is to say that there is one acceptable way of showing excitement? Sesame Street offers different videos to watch, including an e-book. Coover says it would be beneficial to view for children in many settings, like day cares, mother day out programs, preschools, etc. It also offers support to parents on interacting with other parents who have children with an autism diagnosis, as some parents are uncertain about how to support another parent.

“A unique offering is the view of the sibling who happens to have a family member who has autism,” Coover said. “It offers a perspective that I think is sometimes overlooked. Siblings play such an important role in any family, but when a child is diagnosed with Autism, the sibling is put into a position that can feel very lonely and full of adult responsibilities and worry. Sesame Street has offered normalization to a sibling experience that is both encouraging and supportive.”

*Images courtesy of Sesame Workshop

Wendy says the story of her daughter's battle "could be a novel." She wants people to know her daughter, who is a child with Down Syndrome, and their incredible story.

"Children with Down Syndrome have an incredibly higher chance at defeating leukemia," she said. "And by higher I mean get on your knees and say,'Thank you Lord for this extra chromosome!'"

After more than 700 hours of chemotherapy and eight months of inpatient care, Jinger Jo won her batle against cancer. "She did more than win the fight with cancer though," Wendy says. "She blessed me and many others with a new improved outlook on life."

Today, Jinger Joy is doing well and brings joy to her family every day. Wendy shares with us her story of arriving at Cook Children's:

I remember 5 years ago walking off the elevator onto the third floor at Cook Children's and dodging Nerf bullets being shot by nurses into the rooms of children fighting cancer. In my mind I found this highly inappropriate. My child was beginning a battle for her life and these were the professionals that were going to carry us through triumphantly? Not only were they Nerf gun battling, but I wasn't too sure who the nurses were, since they all were dressed in Halloween costumes.

Fast forward eight months and I was completely thankful for the nurses and staff that not only brought life back to my baby girl that cancer was trying to rip away, but they helped us remember how to smile and play while fighting for dear life.

Those crazy nurses, doctors, child life and even security guards that I thought were not taking their jobs seriously at first, proved to be doing their jobs phenomenally as well as putting smiles on the faces of children and parents who felt scared, sick and alone. God bless Cook Children's Oncology (especially the crazy Nerf gun shooting ones).

Putting the "h" and the "o" in hope

If we had one wish, it would be to make it so that no child would ever have to suffer from any kind of illness. Here at the Cook Children's Hematology and Oncology Center, we are working every day on medical treatments and research to help make the blood disorders and cancers that hurt children and teens, disappear.