Down syndrome (DS) is a rare condition. Affecting just one in 690 children born, the disorder receives little attention because of its infrequency, and it can make finding reliable long-term treatment difficult.
However, there’s one pediatrician in Issaquah that’s been looking to change that for people on the Eastside. Dr. Rebecca Partridge has run Virginia Mason’s Down Syndrome Program for nearly six years, allowing a space for families to connect with each other while treating their kids.
Back in 2013, Virginia Mason was looking to fund a new program at their facility in Issaquah. Dr. Partridge, a parent to a child with DS, jumped at the opportunity to lead her own program that would provide comprehensive care beyond the scope of most clinics. For years, Partridge was unsatisfied with the lack of DS specialists in the Seattle area, and she wanted to change that.
“This is what I want to do,” Partridge told Virginia Mason. She wanted her program to provide primary care for children with DS in addition to health care maintenance and coordinating subspeciality needs for each patient. Most parents have to see two doctors to look after a child with DS — one primary care provider, and one for an annual checkup for DS related health issues.
Virginia Mason embraced her idea with, “open arms,” in Partridge’s own words. Her program at Virginia Mason provides both services in one location, so parents don’t have extra stress when caring for their children.
“They’re not constantly having to go here and there to get all of these things done,” Partridge said. “We’re doing it in an effective way for families.”
Her story
Partridge’s journey toward the clinic started years ago in Utah. She was born in Salt Lake City, and as the oldest of seven children, it was her job to contain her fellow siblings. Partridge attended the University of Utah for both undergraduate studies and medical school.
However, during her final days of medical school, Partridge made a discovery: she was pregnant. Then, weeks later, another discovery: her child would be born with Down syndrome.
“I was floored, you know — the bottom fell out of my world,” Partridge said. It took her awhile to come to terms with the news, but when her son was born, she knew things would be okay.
“I fell in love in that moment,” Partridge said.
Her son, Joshua, is a junior at Liberty High School. Partridge said she took great joys in raising Joshua, and was struck by how normal her experience was.
“95 percent of my parenting with him is just parenting,” Partridge said, saying that he spends most of his time talking with friends on social media, and being around his peers.
“It is alternately wonderful, and frustrating. I’m surprised how typical of an experience that I’m having,” Partridge said.
There are many challenges. Parents need to be on the lookout for their child’s health, especially concerning heart defects and hearing loss, and children with DS usually experience a mild to moderate intellectual disability.
Partridge strives to overcome those obstacles and let Joshua live a good life.
“My goal for my son has always been for him to live as typical a life as possible,” Partridge said.“He’s going to have a job, and he’s going to have his heart broken.”
Community, health
With more than 300 patients in her program, Partridge has a lot of work to do. However, with the aid of her nurse care coordinator, Partridge develops a care plan for each patient in her program.
“Everyone is affected differently, but the problems are treatable before they get blown out of control.” Partridge said. Care programs like hers allow her patients to live long, fulfilling lives. According to Partridge, the average lifespan of an individual with DS was 25 in the mid 1980s. Now, people living with DS often reach their 60s with proper care and treatment.
When Partridge isn’t helping parents look for signs of an ear infection or a heart irregularity, she loves to connect families with each other.
“We spend time normalizing their experience and giving them time and space to process this,” Partridge said. Fostering a community where children and parents can discuss their experiences openly is crucial to her.
It’s easy to see why. Partridge has seen the power that forming a community can have on her patients and their families.
“I had a 10-year-old patient walking to the bathroom, who encountered a 6-year-old patient. The 10-year-old got so excited, and she ran up to them and said, ‘You have my face!’ She was so excited to see someone who had her face.” Partridge said.
Dr. Rebecca Partridge can be reached in her office at 425-557-8000. Her clinic is located at 100 NE Gilman Blvd, Issaquah, WA 98027.