22q Program
Coordinated Care for a Complex Condition
Nemours Children’s offers specialized expertise in caring for children with 22q11.2 deletion syndrome (or 22q for short), a genetic condition caused by a small missing portion of the 22nd chromosome. Formerly known as DiGeorge syndrome or velocardiofacial syndrome, about one in 4,000 babies is born with 22q.
22q involves many different body systems and functions, such as the heart, kidneys, immune system, hormones, learning development, speech and more. It can affect each child differently. That’s why it is important get care from a whole team experienced in this complex disorder.
Our team includes multiple specialists who work together and coordinate services, whenever possible. We follow international 22q care guidelines, so you can be confident your child is receiving the best and most comprehensive care available.
We also provide support and guidance along the way. And, as a team, we care for all your child and family needs, all in one place.
Meet the Team
Our Central Florida 22q Program is part of a recognized Center for Cleft & Craniofacial Differences. We’re here from the start, helping your child grow and develop to their full potential. Meet them now.
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Brittany Johnson, BSN, BS, RN
Plastic Surgery Craniofacial Team CoordinatorPrimary Office
Orlando, FL
Our Services
We offer complete, coordinated care for kids with 22q. We bring in the pediatric specialists and providers your child needs, at the right time. Our program includes:
- Patient care coordinator who is here for questions and helps you schedule your child’s visits
- Hospital-based pediatric care from a specialist with experience working with kids who have 22q
- Plastic surgery from a specialist fellowship-trained in plastic surgery and craniofacial surgery
- Speech therapy from highly skilled speech pathologist who works with babies, kids and teens
- Otolaryngology, or ENT, services from specialists with experience in 22q
- Behavioral health specialists, including a neuropsychologist, who help your child grow confident and develop learning and thinking skills
- Social work services to help find community resources, family coping and more
- Seamless access to pediatric specialists as needed, such as cardiologists, geneticists, immunologists, endocrinologists and many others
- Support services, including Child Life services, creative therapies, play therapies and more
See Why Central Florida Families Choose Us
The Center for Cleft & Craniofacial Differences in Central Florida brings together all the care your child needs — from surgery and medical management to rehabilitation therapies and support for the whole family.
Based at the area’s only standalone children’s hospital, see how our team provides compassionate, customized care, close to home.
“The doctors, nurses and other clinicians are always helpful. They care for Aiden as if he is everyone’s baby. They love him very much.”
“I have nothing but great things to say about that hospital. From day one … I knew that Jason was in the right place, surrounded by knowledgeable people.”
- Aiden 1
- Jason 2
Conditions & Treatments
We see many conditions — far too many to list here. The conditions we treat vary depending on the location and providers selected. Don’t see a condition listed? Call us.
Related Specialties & Programs
Complete Care for Your Child
A child with 22q often needs different medical services as they grow. We can help. Our program provides integrated care with a personal approach. Our nurse coordinator walks you through every step.
We offer the full range of services. Everything your child needs is here, in one place.
Our 22q program is part of a center that’s approved by the American Cleft Palate Craniofacial Association. You can trust we offer the highest level of quality care.
Your child’s care is provided by board-certified plastic surgeons and other advanced pediatric specialists.
Your child’s well-being is our top priority. We work closely with your family to help you make the best decisions.
Learn More About 22q
22q11.2 deletion syndrome is a genetic condition that some babies are born with. A genetic condition happens when there is a problem with a part of a child’s DNA. The problems it causes can involve many different body systems and range in severity.
We believe the more you know, the better you can help your child succeed. Here are some trusted resources from our team, including medical information created by the experts at Nemours KidsHealth®.
Convenient Follow-Up Appointments by Video
We offer follow-up appointments through scheduled, live video visits. You can avoid waiting rooms and save travel time. Ask your doctor if this is an option for your family.