The Down Syndrome Program: A Supportive Medical Home for Families

When pediatrician Rebecca Partridge and her family moved to the Seattle area in 2008, finding a doctor for her son who has Down syndrome topped her list. But she was in for a surprise: no primary care Down syndrome program existed. Dr. Partridge got the names of good pediatricians, but none with expertise caring for children like her son.

“Parents here found themselves teaching providers about what their child needed, which put a lot of responsibility on their shoulders,” says Dr. Partridge. “They were having to manage specialists without a sense that one provider knew what the other was doing. There wasn’t one place to go to get consistent primary care.”

Jack1lrSo when Dr. Partridge joined Virginia Mason in 2012, she found the organizational support to create that place. Today the Down syndrome program at Virginia Mason Issaquah Medical Center provides a medical home for patients and their families, offering not only primary care, but specialties including audiology, ophthalmology, sleep medicine and an onsite laboratory. A dedicated nurse coordinator manages referrals and test results, supporting families with continuity of care and the knowledge to meet their children’s unique health needs.

“What parents really like is we can take care of the annual exam and screening tests the same day, under one roof,” says Dr. Partridge. “And the earlier we identify health conditions associated with Down syndrome, the earlier we can treat them and reduce or prevent their impact.”

Better management of health issues linked with Down syndrome – ranging from hearing, vision or respiratory problems to conditions affecting the heart, thyroid or digestive system – is a key reason people with Down syndrome are living longer, more productive lives. Physical and speech/language therapies begun in infancy and early childhood promote better function and social development. A nurturing home life, access to mainstream education and positive support from the larger community mean more adults with Down syndrome are living successfully well beyond midlife.

Currently Dr. Partridge sees patients until their 26th birthday, but plans to expand adult care are in the works. Listening sessions are ongoing, where families who have children with Down syndrome, and adults with Down syndrome are invited to share what they want and need in an adult care program. “There’s definitely a lot of excitement in the community, and there’s definitely a huge need to serve adults now,” says Dr. Partridge, who is seeking to partner with a new provider dedicated to caring for adults.

Dr. Partridge helps parents in another way that is unique to the Down syndrome program: compassionate support before the baby is born. Parents-to-be with a prenatal diagnosis can make an extended appointment, free of charge, to learn more about their baby and what to expect. Dr. Partridge speaks as a physician and as a mother who went through the same experience with her son.

“At the visit I find that parents initially have a list of medical questions, but those don’t take long to cover,” says Dr. Partridge. “Then come the questions they maybe didn’t plan to ask. Can we do this? What will it be like for our other children? What kind of future is our child going to have? These are the questions we tease out over a good hour.”

During these visits, parents begin to process the changes to come. There’s space to talk about grief, what the early days and months will look like and what supports are available. As the mother of teenager with Down syndrome – a kid who loves computers, shooting three-point baskets and hanging with his best buddies – Dr. Partridge can help them look forward to the joy and wonder of seeing the world through their child’s eyes. Your child will have distinct strengths, she tells them, because he or she will experience life in a different way.

“Then the baby is born and I get to watch them fall in love,” says Dr. Partridge. “I watch them adjust to their new life and embrace it.”


A version of this story also appears in the Virginia Mason Health System 2017 Annual Report. 

Comments

  1. Bless you Dr Partridge. My dad’s youngest brother, the uncle closest to me in age and location was Down Syndrome. He lived a long and happy life despite growing up in the 50s and 60s when the primary therapy was institutionalization. His family embraced his difference and his mother, my grandmother was a leader in our community in bringing services however limited at the time to our town. He passed recently at the age of 65. Being his niece and young champion changed my life. I can credit much of who I am to his presence in our family.

    • Rebecca says:

      Thank you for your lovely comment Rene! I’m always glad to hear from other people who recognize how much people with DS add to our world! What a great advocate you have been for your uncle!

  2. Thanks for all you are doing. Love to be of help if ever possible.

    • Hi Sue, it’s Jennifer, from your neighborhood! I interviewed Dr. Partridge and wrote this piece originally for our annual report. As an aside, I was thrilled to hear Devon interviewed on NPR recently. Thanks for reading and your comment. I’ll check out “raise expectations,” and if I do hear of opportunities that could interest you to help improve our program, I’ll get in touch. Hope all is well with your family.

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