22q doesn’t diminish Molly's joy

Before starting kindergarten in August 2018, Molly spent the summer traveling with her family, swimming, spending time in the country with her grandparents and playing dress-up with her big sister. She loves her big sister, ice cream and dogs. Seeing her, you would never guess that her earliest days were spent at Children's Medical Center Dallas.

Six years ago, Jim Bob and Suzi opened their hearts to their youngest daughter and walked through a pregnancy with Molly's birth mother. Testing at 34 weeks revealed that Molly had 22q11.2 deletion syndrome. This genetic disorder affects nearly every system in Molly's body, including her heart. She had two major surgeries before her first birthday, with more planned as she grows up.

A lifelong disorder that occurs with a deletion of the 22nd chromosome, 22q has given Molly many hurdles to overcome:

• A congenital heart defect (Tetralogy of Fallot) surgery at 3 months
• Cleft palate surgery at 9 months
• GI issues
• Developmental delays
• Feeding difficulties
• Hearing loss
• Speech difficulties
• Immune and endocrine issues
• Future heart procedures

Practicing her sounds prepares Molly to find her voice

A cleft palate affects a child's speech when the velopharynx (the back of the throat/palate) does not properly open and close. Molly's next craniofacial surgery will move her closer to the day when she can form all of her sounds, and communicate her thoughts and emotions verbally to her friends, teachers and family.

Performing that surgery is Alex Kane, M.D., Division Director of Plastic Surgery at Children's Health℠ and Professor at UT Southwestern. He has cared for Molly since she was an infant.

A team approach to Molly's care

22q11.2 deletion syndrome is estimated to affect 1 out of 4,000 children born, although it is likely much higher due to varying presentation and complexity in diagnosis. In most cases, it's a first-time occurrence in the family. There is no cure, but a team approach helps the family manage each new challenge, from motor delays and speech therapy to heart valve replacement, immune deficiency, GI issues and more.

We're sharing a few of Suzi's social media posts to give parents an idea of the complexity of Molly's multidisciplinary care, and the humor, pluck and camaraderie that characterize her family.

• Plastic and Craniofacial Surgery: "At clinic, we see Molly's craniofacial surgeon – Dr. Kane, a speech therapist, a dentist, an orthodontist, ENT, a psychologist, a social worker, the craniofacial team coordinator & more – WHEW!"
• ENT: "Molly had ENT/Otologist & audiology appointments today. While there were no big changes, there was one HUGE accomplishment. Blood pressure cuffs are Molly's enemy. They Freak. Her. Out. Typically, she sits in my lap and I coax her through while she cries. Today, for the first time, Molly sat all alone, pulled up her sleeve and didn't freak out! 'I DID IT!' Yes, you did! Hooray for you, sweet Molly!"
• Cardiology: "CARDIOLOGY TIME! We were a little nervous this go-around. Molly had her first cardiology visit in 22 months – the longest she's ever gone. Thankfully, it was a very good visit! Her heart is doing well. We will continue to watch and wait, like we've been doing for the past 5 years. And we will celebrate another good visit!"

Molly will continue to see the team at the Plastic and Craniofacial Surgery Program at Children's Health, and they will cheer her on as she continues to sail through the milestones of childhood – singing, jumping, playing, eating her favorite foods and talking with her friends.

"One of our favorite things about being at Children's Health is that all of her doctors communicate with each other," Suzi says. "They are able to know what is going on in her world. Because it's not about just one specialist. She's a complex kid and an amazing little person. She deserves the very best care!"

Learn more

To learn more about the multidisciplinary care teams that are by Molly's side, covering her complex needs from head to toe, visit the Programs and Services pages for Plastics, GI, Neurology, ENT and Cardiology.

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