Parents who receive a prenatal diagnosis are given an opportunity to meet and talk with a developmental pediatrician about Down syndrome and ask questions. The Down Syndrome Program works closely with the Advanced Fetal Care Center at Boston Children's Hospital. Please feel free to contact The Down Syndrome Program Coordinator who can provide materials on Down syndrome, make connections and describe support services.
The Down Syndrome Program at Boston Children’s Hospital offers comprehensive services for parents and children with Down syndrome. We can individualize our services for families as needed, but we wanted to share below the basic information of what to expect in our clinics and appointments.
ALL APPOINTMENTS TAKE PLACE ON FEGAN 10TH FLOOR
New Baby Appointments:
Families of newborns or young babies are welcome to come in for an individual appointment with our DS Program Director, Dr. Emily Davidson. This is typically a one hour appointment where the doctor will review medical history, discuss development, and answer any questions the family may have. We consider this an introductory visit prior to joining our Thursday morning clinic for children ages 8 months to 3 years old. Families will be given a date of their first Thursday morning clinic visit at the same time of setting up this New Baby appointment. We ask that families have their pediatrician fax newborn discharge summary reports, blood work results, and any other important information about their baby for us to prepare for the visit.
Thursday Morning Clinic:
The DS Program's Thursday clinic serves five children from 8 months to 3 years old each week. Children are seen in this setting twice a year until the child turns 3. In this clinic, children are seen by a multi-disciplinary team, which includes a developmental pediatrician, speech pathologist, physical therapist, nutritionist, dentist and an audiologist. We offer hearing exams at each appointment. We also have the Program Coordinator and Patient Liaison guide families through their morning and provide information and resources as needed. Thursday clinic starts at 9:00 a.m. and ends around 12:30 p.m.
We ask that each family fill out a short form about services being received, resources, and medical history when they arrive to their clinic visit. After the visit, each clinician will send a report to the family and their community pediatrician with a summary of the visit including recommendations and follow up suggestions.
Wednesday Afternoon Clinic:
Children from ages 3 to 18 years old come on Wednesdays afternoons to see our team. The Wednesday clinic consists of a meeting with a developmental behavioral pediatrician and also could include a nurse practitioner and/or developmental pediatric fellow. We talk to families while we set up their visit to discuss the family's needs so we can personalize your day. We are able to coordinate visits with other specialists in our hospital such as an eye exam, a hearing test, a nutrition consult, a physical therapy consult, a dental/orthodontic exam or any other specialist a family may request.
We also have the Program Coordinator and Patient Liaison provide families with direction through their visit and resources or information as needed. Wednesday afternoons visits can be at 1pm, 2:20pm or 3:40pm on Fegan 10. The family will be provided a list of coordinated appointments once made so they are aware of times and locations of each visit. After the visit, each clinician will send a report to your family and your pediatrician with a summary of the visit including recommendations and follow up suggestions.
We have an intake form that we require all families (new and past) to fill out prior to making an appointment in our program. This intake form serves as a guide for the doctor and provides us with current and thorough information about your child’s health, development, behavior, etc. By reviewing your intake ahead of time, our doctors will maximize your visit by focusing on the topics that concern you the most.
If you are interested in making an appointment, please follow the steps listed on our main page!
A Must See Presentation:
During our Allen C. Crocker Speaker Series, we had Linda Zaccagnini, RN, MSN, NNP of the Advanced Fetal Care Center and Lori Dobson, MS, CGC of Brigham and Women's Hospital present a thorough and informative talk on Navigating a Prenatal Diagnosis of Down Syndrome. This talk can be used as an educational tool and resource for parents as well support staff and others! You can watch it by clicking here!