Helping Children with Down Syndrome Achieve Their Full Potential
Duke pediatric geneticists provide coordinated, lifelong care for children with Down syndrome. As part of the Duke Comprehensive Down Syndrome program, your child will receive care, support, and resources to become as healthy and independent as possible.
Caring for Children with Down Syndrome
Down syndrome is a chromosomal condition that is often diagnosed before birth. In addition to developmental delays, intellectual disabilities, speech problems, and hearing loss, children with Down syndrome may experience other medical conditions including heart abnormalities, GI problems, pulmonary problems, spinal conditions, neurological concerns, and problems with their gross motor skills.
- Our comprehensive Down Syndrome program includes experts with years of experience working closely with individuals with Down syndrome. Our team includes specialists in genetic counseling, speech and feeding therapy, nutrition, social work, and physical therapy.
- We also provide referrals to specialists in ophthalmology, audiology, cardiology, gastroenterology, endocrinology, neurology, psychology, and occupational therapy. Our ongoing care of your child ensures related medical conditions are diagnosed early and treated promptly.
Our Research-Based Approach
Many of our doctors are also researchers who are nationally recognized for advancing the health and well-being of people with Down syndrome. Our research into lifelong preventive care and monitoring for Down syndrome and our collaboration with experts from different specialties are ongoing. We are currently investigating why some individuals with Down syndrome may have a sudden decline in thinking, called “Down syndrome disintegrative disorder.” Through these studies, we hope to identify the causes and potential treatment for this cognitive decline.
Our research program is supported by the Anna’s Angels Foundation, which is dedicated to improving cognition and communication abilities in individuals with Down syndrome.
Preventing serious medical conditions is the cornerstone of the care we provide. Our ongoing care for your child includes preventive screenings, thyroid testing, monitoring of development, and early intervention services. We help coordinate care to be sure your child receives regular hearing checks, vision checks, cardiology testing, and referral to other specialists as needed.
People with Down syndrome are often able to understand more than they can express. Speech therapy can improve their communication skills and give them ways to communicate more fully at home, at school, and in group settings.
Low muscle tone, flexible joints, and decreased strength are often seen in people with Down syndrome and can impact the development of gross motor skills. Our physical and occupational therapists help children develop movement patterns that lead to good posture, proper foot alignment, and an efficient walking pattern.
The low muscle tone that comes with Down syndrome means many children experience constipation and other gastrointestinal conditions. A healthy diet is key to good health and strong development. A nutrition plan designed to fight constipation includes lots of fiber, fresh fruits and vegetables, and plenty of fluids.
Family and Support Services
Our entire Down syndrome team helps you discover community resources and teaches you how to advocate for your child’s education, so that he or she receives needed services and care at school and throughout his or her life.
Our child life specialists provide support, education, and guidance to help you and your child during treatment and hospitalization. Child life specialists explain procedures, offer encouragement, and use fun activities to take your child’s mind off treatment.
Our social workers can help you navigate the medical system and coordinate the variety of health services your child needs. We help you work with insurance providers, connect you with resources, and help you manage details related to your child’s care.