The goal of our Down Syndrome Program is to maximize your child’s potential by providing coordinated care from a variety of medical and therapeutic specialists — all in one place. Our Down syndrome experts work together to assess and prevent medical problems, provide resources and emotional support, and encourage opportunities for Down syndrome families to interact with one another.
Down syndrome is the most common chromosomal abnormality, occurring in approximately one out of every 800 births. Each child with Down syndrome is unique, although many share common physical, medical and developmental problems.
Phone: (302) 651-5916
- Nina Powell-Hamilton, MD, FAAP, FACMG, Pediatric Geneticist, Down Syndrome Program Director
- Lauren Davey, PA-C, MSS, MSPH, Physician Assistant
Additional Team Members
- David Gregory, MSW, Social Worker
- Karen Josefyk, MSR, PT, PCS, Physical Therapist
- Becky Kunzelman, MS CCC-SLP, Speech-Language Pathologist
- photo ID
- medical and pharmacy insurance cards
- preferred pharmacy name and phone number
- names and dosage of all medications, including over-the-counter medication, your child is currently taking
- guardianship and custody papers, if a legal guardian rather than a parent accompanies your child
Our Down Syndrome Program
In Delaware, an estimated 15 children are born with Down syndrome each year. Through the Down Syndrome Program at Nemours/Alfred I. duPont Hospital for Children, we provide a coordinated, multi-specialty approach to address every child’s medical, developmental and social needs — helping them reach their full health and developmental potential.
Our team not only provides medical care and referrals, we also offer emotional and psychosocial support, as well as genetic services for each patient and family. In a single visit, we can address all aspects of your child’s care:
- assessing, monitoring and working to prevent medical problems that can be associated with Down syndrome
- providing continuity and coordination of ongoing subspecialist medical care
- helping create and implement a customized physical, occupational and speech/language therapy plan
- providing resources and support opportunities for you and your child to interact with other families and children with Down syndrome
Visits to our Down Syndrome Program are comprehensive and typically last about 60 to 90 minutes. At each visit, your child will be evaluated by our pediatric geneticist or physician assistant, who will recommend appropriate tests and referrals.
Therapy services (physical, occupational and speech/language therapy) are critical elements to managing Down syndrome in children. During your visit, your child’s therapy services will be reviewed by a physical therapist, whose goal is to ensure that an individualized therapy plan is in place and maintained for your child’s specific developmental needs. Our speech-language pathologist will also offer guidance, on a consultative basis, regarding speech/language and feeding concerns.
Also an integral part of our team is our social worker, who provides support for families and assists with insurance concerns, transportation and other issues.
Another resource for our families is the executive director of the Down Syndrome Association of Delaware, who volunteers in our program, providing information regarding programs and resources available in the community and through her organization.
To offer your child the most comprehensive Down syndrome care, we can also arrange for you to meet with any of our other onsite pediatric subspecialists, as needed, in:
In the absence of specific medical problems, which may require a higher level of care, we usually follow children with Down syndrome at six-month intervals, from birth until approximately 3 years old. After that, we typically see kids once a year. Of course, if you have questions or concerns at any time, our Down Syndrome Program team is here to help — every step of the way.