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October is Spina Bifida Awareness Month

Spina Bifida is a congenital condition and a type of neural tube defect that occurs early in the development of a fetus in utero when a portion of the spine fails to fully close. In such cases, the backbone does not develop in the typical way and leaves the spinal cord and related nerves exposed, causing damage and a resulting disability.

Over the past twenty months, Malachi has spent over 380 days in the hospital.

How is  Spina Bifida Treated?
At birth, newborns with Spina Bifida undergo surgery in the first day or two of life to close the open lesion in the spine. However, depending upon the severity of the damage, those with Spina Bifida often require mobility aids, including crutches, walkers, or wheelchairs.

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Malachi Stohr, 2 weeks old | Photo courtesy Whitney Stohr

Several other conditions may also present alongside Spina Bifida. One common associated diagnosis is Hydrocephalus, a condition in which fluid accumulates in the brain. For those with Spina Bifida, this occurs due to the differences in the formation of the spine. Hydrocephalus can be life-threatening. The most effective way to treat the condition, and alleviate the pressure caused by the buildup of fluid, is through brain surgery to implant a sort of drainage device, called a shunt. While life-saving shunts often fail or become blocked, requiring additional brain surgeries (sometimes dozens!) over the course of a lifetime. Coincidentally, September was Hydrocephalus Awareness Month.

 Spina Bifida is a relatively common condition, and those living with Spina Bifida are often integral parts of their communities. Malachi, a twenty-month-old toddler with Spina Bifida, now calls this community “home.”

Meet Malachi
Malachi was born prematurely in January 2018 and immediately whisked away to Seattle Children’s Hospital to undergo his spinal closure surgery. He was taken back into the operating room, on his second day of life, for brain surgery and to place a shunt in his head to treat Hydrocephalus. His recovery was challenging, but his journey, at that point, was only beginning.

spina bifida, whitney stohr, malachi stohr, spina bifida awareness
Malachi Stohr, 8-months-old, after his initial discharge from Seattle Children’s Hospital | Photo Courtesy, Whitney Stohr

Over the past twenty months, Malachi has spent over 380 days in the hospital.

At two-months-old, Malachi began experiencing the symptoms of heart failure. It was determined that open heart surgery was necessary to correct two congenital defects (“holes” in his heart). At five months, a tracheostomy was performed, making Malachi dependent on a trach and ventilator — a type of artificial airway and a machine that helps him breathe. That same month, Malachi experienced his first shunt failure and his second brain surgery to revise the defective portion of the device. He would later have a sixth surgery to place a feeding tube through his stomach.

Malachi was initially discharged from the hospital in August 2018 to his family’s home in Yakima. However, he was readmitted in April of this year following frequent trips and several medical flights back to Seattle. That is when it was discovered that Malachi suffers from severe food intolerances. He remained in-patient at Seattle Children’s until late-August when he came to his new home in downtown Auburn.

Relocating to Auburn

My name is Whitney Stohr, and I am Malachi’s mom. Along with his father, we made the decision this summer to relocate to your community to be closer to Malachi’s specialists and emergency services at Seattle Children’s Hospital. We have thoroughly enjoyed our time here thus far and look forward to making more memories.

spina bifida, whitney stohr, malachi stohr, spina bifida awareness
Whitney Stohr celebrating Malachi’s 1 year birthday | Photo courtesy Whitney Stohr

 It is my hope that—by sharing Malachi’s story and raising awareness about Spina Bifida—I can shine the spotlight on the life of one of your newest neighbors. Malachi is a complex, little boy and has a lot going on. When we leave our home, we have tubes and oxygen tanks and scary-looking, medical equipment. But, here’s the thing: as adults, when we see someone different than ourselves, our first reaction is to avoid staring, to avert our eyes, to look down at our feet because, after all, that’s the “polite” thing to do, right? To avoid staring? Honestly, one of the lessons I’ve learned in becoming a medical caregiver to Malachi is that avoiding eye contact and, in effect, ignoring people with disabilities out of some perceived “politeness” is one of the most isolating things. It makes your family feel disconnected from the community around them. Please help me change that.

 By sharing our story, I hope to take some of the mystery out of who we are as a family. I want to tell you that it is okay to look at us and to look at my son when you see us out in the community. It is okay to ask questions about his condition. I will answer your questions. And, most importantly, the best possible thing you can do when you encounter someone who has an obvious disability or medical condition—and the most important thing you can teach your own children to do—is, simply, to say “hello.”

Taking steps so that everyone feels included and valued in a community is such an important and necessary goal.

 So, on behalf of Malachi and myself: “Hello. It is really nice to meet you.”


Whitney Stohr recently joined the Auburn Area Chamber of Commerce staff at the Connect Communicator.  She is a digital marketing ninja, community engagement specialist and proud owner of strong opinions.  Keep an eye out for our upcoming introduction piece on her for her new AACC role!

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