Boy born with spina bifida turned his parents into advocates

Whitney Stohr sings to her little boy. Holding 2½-year-old Malachi on her lap, first it’s “the wheels on the bus go round and round” before she makes the kiddie song more personal with “the Neptune on the bus goes bark, bark, bark.” Neptune is one of the Lynnwood family’s two dogs.

Hearing his dog’s name, a hint of a smile brightens Malachi’s face.

“It’s a different life now,” said Stohr, whose only child was born with the most severe type of spina bifida, known as myelomeningocele.

She and her husband, Jason Hendrickson, moved from their home in Yakima to Western Washington to be near Seattle Children’s Hospital. Malachi spent eight months at the hospital after his birth in January 2018, another five months the following year, and continues to be treated often by specialists there.

With complex medical issues, Malachi needs 24-hour care.

Paralyzed from the hips down, his mother said he’ll be “full-time in a wheelchair — he’ll be a wheelie dude.” He needed a tracheostomy, and with a trach tube he sleeps on a ventilator. And four times a day he is tube fed, directly to his stomach.

Recognizing October as Spina Bifida Awareness Month, Stohr wrote “An open letter for inclusion,” published on the Seattle Children’s website. “We believe our son has boundless potential and a bright future. He has the most amazing, unique, extraordinary spirit,” she wrote. “While there is no hiding that he is different than other kids, those differences make him beautiful.”

The 34-year-old mom wrote that she doesn’t want others to “look past” her son’s disability. “I want you to see Malachi, all of him,” her letter said. “Malachi’s disability is just one aspect of who he is.”

“As a family, we celebrate our differences, and we want you to celebrate them too,” she wrote.

Spina bifida, a neural tube birth defect, occurs early in pregnancy when the spine and spinal cord don’t form properly. In the most serious type, before surgical repair, the spinal canal is open along several vertebrae in the lower or middle back. Membranes and nerves push through, forming a sac on the infant’s back, typically exposing tissues and nerves.

The condition often includes hydrocephalus, fluid buildup that puts pressure on the brain.

Malachi has had six surgeries, most critically a procedure at Seattle Children’s the day he was born to close the spinal defect. The next day, a surgeon implanted a shunt to drain fluid from his brain. He’ll need a shunt for the rest of his life.

Due to Malachi’s round-the-clock needs, the family has help. Heaven Aguilar, a pediatric home health nurse with Fedelta Home Care, was there Wednesday, busy with a tube feeding.

“Heaven is here Monday through Thursday days. We have a night nurse, and it’s just us on weekends. It’s necessary,” said Stohr, adding that before taking their baby home they were trained in CPR, seizure rescue and use of the ventilator.

Malachi is little boy with a big title: Patient Ambassador.

Kathryn Mueller, senior public relations specialist at Seattle Children’s, said the hospital’s Patient Ambassadors are featured in the media and at fundraising events. In ways that fit their lives, ambassadors and their families encourage the community to donate and be involved with the hospital — “because for medically complex children like Malachi, their ability to thrive relies on specialty pediatric care,” Mueller said by email Thursday. Most all of Malachi’s specialty care “is funded in part by gifts from the community.”

Any donations count toward It Starts With Yes: The Campaign for Seattle Children’s. With a $1 billion goal, it’s the largest fundraising campaign in the hospital’s history.

“Malachi sees dozens of specialists,” Stohr said. “The hospital is fantastic. We wouldn’t want to be anywhere else.”

Stohr said they learned of their baby’s spina bifida during her 19th week of pregnancy. For the couple, it meant life-altering decisions. Before their move from Yakima, Hendrickson worked in the agricultural industry. Stohr, educated as an attorney, was running a nonprofit.

During Malachi’s initial eight-month stay at Seattle Children’s, Stohr stayed with her mother at a Ronald McDonald House near the hospital.

“We changed careers,” said Stohr, who now works from home doing marketing, communications and a website for the Auburn Area Chamber of Commerce. Hendrickson is a vice president of e-commerce for EZ-Access, a manufacturer of ramps and other accessibility equipment. “It is our world now,” Stohr said.

What of Malachi’s world? Ahead, Stohr said, are school and what she believes will be a satisfying life. Malachi was to have started this winter with an Edmonds School District preschool program, but the coronavirus makes those plans uncertain.

For generations, Stohr said, spina bifida was a condition seen only in infants and children. “Life expectancy has increased significantly due to medical advances,” she said. “An independent, fulfilling life comes down to services, access, geography and income.”

In her letter about inclusion, Stohr wrote that Malachi has given her strength, “and he’s also given me a voice.” Her goal is to use that voice, and her legal training, as an advocate for creating an inclusive world.

”It’s such a comprehensive issue, having a kid with a disability — with education, inclusion, accessibility, affordable age-in-place housing,” she said. “We never would have known. It’s been horizon-broadening.”

Stohr has seen a difference, since her childhood, in how people with disabilities are viewed.

“It’s our duty to make it better for the next generation,” she said. “I hope Malachi benefits from the advocacy we’re doing. If not, I hope the next kid does.”

Julie Muhlstein: jmuhlstein@heraldnet.com

Learn more

Spina bifida information: www.cdc.gov/ncbddd/spinabifida/facts.html

More about Malachi Stohr-Hendrickson: www.seattlechildrens.org/giving/it-starts-with-yes/patient-ambassadors/malachi/

Seattle Children’s Hospital fundraising campaign: www.seattlechildrens.org/giving/it-starts-with-yes/