Caring for Children with Down Syndrome
About Down Syndrome
Children with Down syndrome are born with an extra chromosome that may impact their physical and cognitive development. The condition 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, gastrointestinal problems, pulmonary problems, spinal conditions, neurological concerns, and problems with their gross motor skills. Our experts ensure your child has access to the resources they need to manage these and other conditions.
After Your Child Is Born
Our medical geneticists may see your child shortly after birth to look for physical signs of Down syndrome. Genetic testing may be performed to identify the extra chromosome that confirms the condition. They will discuss their findings with you, ensure you understand your child’s diagnosis, as well as the possibility of having additional children with Down syndrome.
Our Complex Care Clinic
When your child is about one or two years old, our complex care clinic will manage their care through regular visits as they grow. We perform lab work and evaluations of your child’s development, make referrals to specialists if your child has a condition that requires additional care, and offer resources, such as physical therapy, occupational therapy, and speech therapy, to help your child reach their developmental milestones. We also ensure that your child benefits from school and community resources available and maintain open communication with your primary care provider to keep them informed about your child's care.
Ongoing Care and Services for Down Syndrome
A team of primary care providers, nurse practitioners, nutritionists, social workers, genetic counselors, and other providers who specialize in caring for children with Down syndrome staff our clinic.
Preventive Care and Monitoring
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.
Often, people with Down syndrome can understand more than they can express. Differences in motor strength and coordination can also affect speech clarity. Speech therapy can help improve communication skills and provide tools for your child to communicate better at home, at school, and in the community. Feeding and/or swallowing difficulties are common in children with Down Syndrome.
Feeding therapy can help strengthen the muscles needed for chewing and swallowing, explore new foods in positive ways, and make mealtimes more enjoyable for the whole family.
Physical therapists (PT) help children with Down syndrome build strength, coordination, balance, and mobility.
Through engaging, play-based activities, physical therapists work on skills such as rolling, sitting, crawling, walking, running, and jumping. PT also addresses posture, endurance, and safety with climbing, playground play, and sports, setting the foundation for lifelong participation in physical activities.
Our therapists also guide your family through in-home programs and positioning techniques to encourage progress between sessions.
Occupational therapists (OT) help children with Down syndrome develop the skills they need to thrive in everyday life. Because children with Down syndrome may experience differences in muscle tone, coordination, sensory processing, and learning, OT provides individualized strategies to support growth and independence.
Through fun, play-based activities, we work on fine motor skills such as grasping, writing, and self-feeding, as well as gross motor skills like balance, posture, and coordination.
Therapists also focus on daily living skills, such as dressing, grooming, and using utensils, which build confidence and independence. OT supports sensory regulation, attention, and social participation, helping children engage more fully at home, in school, and in the community. By working closely with families, therapists share practical strategies and home activities that encourage progress across settings.
Nutritional Support
A balanced diet can help you manage conditions related to Down syndrome. Nutrition counseling can help you and your family implement strategies that address gastrointestinal symptoms associated with low muscle tone, like constipation, and aid in weight management. A registered dietitian can provide you and your family with nutritional support that encourages proper growth and development in your child.
Referrals to Specialists
We provide referrals to specialists within and outside of Duke because we understand that healthcare is different for every child. Our ongoing care of your child ensures related medical conditions are diagnosed early and treated promptly.
Family and Support Services
Resources for Your Family
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.
Education and Guidance
Our social workers provide support, education, and guidance to help you and your child during treatment and hospitalization. They explain procedures, offer encouragement, and use fun activities to take your child’s mind off treatment.
Care Coordination and Support
Our patient navigators 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.
