Sam’s Health Journey

Sam is a young adult now and is thriving. Health issues are a continuing challenge for people with Down syndrome, however. People don’t understand when they see Sam out in the community or participating in an activity that behind the scenes, the smallest thing can affect the house of cards that makes up her health.

As a little girl, she needed tubes in her ears because her ear canals were so tiny that it was hard for fluid to flow through. Sam saw the otolaryngologist twice per year for audiology testing and had her adenoids and tonsils removed.

As a small child, Sam had chronic sinus infections that turned to pneumonia many times, and had an allergist visit annually. She will always be followed by a cardiologist, and she required much more sleep than the average child – 11 to 12 hours each night.

She had a sleep study each year to determine if she has sleep apnea, as is common among many people with Down syndrome. Sam saw an eye doctor as a child to ensure that she could see what was on the smartboard at school, because so many people with Down syndrome have compromised vision. She has temperature instability – her body has difficulty managing its temperature, so her hands and feet can become purple in the winter and “sweaty hot” in the warmer weather.

As a child, Sam required an x-ray of her spine to make sure that her discs weren’t fused together at her neck, like many people with Down syndrome. This would make it dangerous for her to participate in sports or physical education. Thankfully, this was not the case with Samantha. She went on to be a dancer, a swimmer, a baseball player and a happy student, but if any one thing was off, it could affect her entire day and mood. It was manageable – but only if we stayed on top of it.

We learned about all this because of the fine medical and public health services that are available. We availed ourselves of all we could, starting with Early Intervention when Sam was six weeks old. We had a physical, occupational, and speech therapy along with a developmental educator at our house at least once per week until Sam was three years old.

Sam still requires a lot of sleep and has annual appointments at the adult Down syndrome clinic at Mass General Hospital with physician, cardiologist, nutritionists, ENT, audiologist, ophthalmologist, gynecologist, and lifestyle wellness physician.

Because we have remarkable healthcare available to us, Sam is THRIVING as an adult!