Since 1967, Children's Hospital Boston's Down Syndrome Program has helped families raising children born with Down syndrome. In September of 2009, the program expanded to serve children and young adults up to age 18. Clinicians collaborate with primary care physicians (PCP) to help families maximize the potential of children with Down syndrome.
Children referred to the Down Syndrome Program have an opportunity to be evaluated by a multi-disciplinary team. For children up to age 3, a day's visit to the program offers consultation with a developmental pediatrician, physical therapist, speech language pathologist, dentist, audiologist and nutritionist. Older children's appointments with a physician and nutritionist are coordinated with an audiology evaluation. Each team member's evaluation, in addition to X-rays and laboratory screens, are turned into a comprehensive report for the child's PCP.
For expectant parents who received a prenatal diagnosis of Down syndrome, the program offers nondirective counseling through the Advanced Fetal Care Center. During these visits, families are given information, have the chance to ask questions and learn about community resources.
Children with Down syndrome are at increased risk for a wide range of health problems, ranging from heart conditions to leukemia. The Down Syndrome Program stays current on these problems in patients of all ages.
Specialists review each child's medical history and ensure that all relevant tests are completed, which could include those for:
X-rays to assess for atlantoaxial instability
exams to evaluate hypotonia and motor function
Children with speech problems may be candidates for communication devices from our Augmentative Communication Program. In addition to assessing speech and language in younger children, program speech language pathologists are also experts in assessing swallowing difficulties. Because children with Down syndrome usually have small Eustachian tubes draining the middle ear, audiology evaluations are recommended every six months until age 3, and then annually throughout childhood.
We also provide behavioral and psychological services in order to address problematic behaviors and conditions that may present differently in conjunction with Down syndrome, such as autism, anxiety disorders and obsessive compulsive disorder.
At each visit, the Program Coordinator and Resource Specialist review family needs for services and provide information on community supports such as the Department of Developmental Services, the Federation for Children with Special Needs, MassHealth and others. We collaborate with the Massachusetts Down Syndrome Congress to provide networking, advocacy and parent-to-parent mentorship opportunities, depending on a family's individual needs.
The Down Syndrome Program welcomes visiting students and professionals from a wide range of disciplines, including high school students considering a career in child development, medical students, pediatric residents, fellows and community physicians who wish to learn more about how to serve the unique needs of this patient population.
Emily Jean Davidson, MD, MPH
Angela M. Lombardo, BA
Brian Skotko, MD, MPP
Kathryn Brown, MS, RD, LDN
David Saul Stein, PsyD
Pediatric Psychology Fellow