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An Open Letter: Let’s Celebrate Our Differences

In recognition of Spina Bifida Awareness Month, Whitney Stohr penned an open letter encouraging inclusion. She asks people to join her in celebrating our unique differences and to see her son for the extraordinary child he is.

Whitney and her husband, Jason, found out their son Malachi would be born with spina bifida when she was 19 weeks pregnant. Whitney said the moment they walked through the doors of the hospital they knew they were in the best place possible to give Malachi the best care possible. Whitney and Jason call Seattle Children’s a second home. The Stohr family moved from Yakima to Lynnwood to be closer to the expert care Malachi needs at a moment’s notice, offering them much-needed peace of mind at a time when there’s so much uncertainty.

In total, their family spent more than 380 days at Seattle Children’s, helping Malachi overcome tremendous hurdles. Today, in the midst of a pandemic, Malachi’s healthcare needs remain complex and require seamless coordination amongst his many providers at Seattle Children’s, the only nationally ranked standalone pediatric hospital in the Pacific Northwest.

Malachi’s incredible, ongoing medical journey is only part of their story. Whitney says she hopes people see the bright future Malachi has ahead of him. Read full post »

Get Care When Your Child Needs It

My two-year-old son Malachi is a medically-complex Seattle Children’s kiddo and a “frequent flyer” here at the hospital. We visit the hospital often—for clinic appointments, routine procedures, sicknesses and medical emergencies. Malachi was diagnosed with Spina Bifida before he was born. He had several lifesaving operations in his first few months with us including spine and brain surgeries on his first two days of life.

Moving to get the care we needed

Malachi, his dad, and I currently live in Auburn, Wash., however we didn’t always live in Auburn. We moved from Yakima to be closer to the care Malachi needs. After two emergency air flights in two weeks just after Malachi’s first birthday, we made the decision to relocate to Auburn.

Like most parents who have medically complex kids, we were kind of pros at social distancing even before COVID-19.

As the parent of a medically complex kiddo, the current pandemic is especially concerning. We were especially cautious early this spring as news of the impact of the virus began to spread. We went into complete isolation—no one in or out of our home—on March 12. Like many parents in our situation, my husband and I were intent on doing everything possible to avoid a hospital admission. We both began working from home. We cancelled all clinic appointments and, instead, opted for telemedicine appointments with my son’s providers. Telemedicine has been so incredibly helpful for us but some things demand in-person care.

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