My visit to the MGH Down Syndrome Program

At the end of the summer, I visited Mass General Hospital’s Down Syndrome Program as a connecting component to my Independent Research and Design (IRaD) project on the genetics of Down syndrome.  The MGH Down Syndrome Program “integrates state-of-the-art resources with compassionate, comprehensive care through a multi-disciplinary approach.”  It consists of five distinct clinical services, split up by age group, to ensure each patient receive the best care appropriate for their age and needs.  The five groups are, Prenatal ServicesInfant and Toddler Clinic (ages birth-5)Child Clinic (ages 5-13)Adolescent and Young Adult Clinic (ages 13-21), and Adult Clinic (ages 21 and older).

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While shadowing at the MGH Down Syndrome Program, I was given the opportunity to spend time with a patient in the Infant and Toddler clinic as she went through a typical long day of appointments.  I observed her with an occupational therapist and a speech therapist, each checking her developmental progress; a nutritionist, checking her diet, likes and dislikes; and her doctor, Allie Schwartz, MD, an internist, pediatrician, and co-director of the Program.  I was fascinated by the patient’s interactions through each of her check-ups as well as her ability with sign language; although she has developmental delays, she knows approximately 20-30 signs and understands almost 80! I was also impressed with how similar her treatment was to other children.  Because she has an aversion to the texture of fruit, the nutritionist suggested heating it up or mixing it in with another food, the same advice that would be given for most infants.   

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The other co-director of the MGH Down Syndrome Program is Brian Skotko, MD, MPP, a board-certified medical geneticist. Dr. Skotko is a graduate of Duke University, Harvard Medical School, and Harvard Kennedy School; in addition, he is the co-author of national award-winning books Common Threads: Celebrating Life with Down Syndrome and Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters.     Dr. Skotko was recently interviewed regarding his research connecting Down syndrome and Alzheimer’s disease. Dr. Skotko has a sister, Kristin, who has Down syndrome; she has been a source of inspiration throughout his career. 

I really enjoyed my time observing at the MGH Down Syndrome Program and meeting with the whole team. I was honored that Dr. Skotko took precious time from his busy schedule to meet with me and discuss his career, research, people with disabilities, and my dance program. I hope to visit the Program again soon!  

Dance, move, and empower,

Sierra

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