On May 7, 2018, Whitney Stohr slumped to the ground in the corner of her son’s room in Seattle Children’s Pediatric Intensive Care Unit.
Her son Malachi, who was born with a severe form of spina bifida, had undergone a tracheostomy days before. When he woke up after the procedure, his pain was so intense his body went into shock.
That night, Stohr remembers hearing beeps and alarms blaring in their room. Malachi wasn’t getting enough oxygen and his heart rate was dropping. Providers rushed in to perform CPR.
“I just crumbled to the floor,” Stohr remembers. “I was scared he wasn’t going to make it.”
That’s when a provider from the Medically Complex Care team knelt beside Stohr.
“She looked me in the eye and said, ‘It’s okay Whitney. We got him. He’s stable. He’s going to be okay.’ She told me that night that I needed to be strong for Malachi, and I haven’t stopped yet.”
The Stohrs have come a long way since then, and while Stohr has feared for her son’s life countless times, Seattle Children’s workforce members have been like a second family during the most challenging moments.
“I didn’t know if I was going to have a baby when I woke up”
Stohr and her husband, Jason, were thrilled when they learned they were expecting their first baby. They imagined their child playing sports, going to science camp and, one day, heading off to college. They bought baby clothes and designed a nursery. They picked out their son’s name: Malachi.
But at 17 weeks, an ultrasound revealed Malachi had the most severe form of spina bifida — called myelomeningocele — where the spinal cord and nerves are exposed in the womb through an opening in the spine.
Five weeks before her due date, she went into labor in their hometown, Yakima. She was airlifted to the University of Washington Medical Center where Malachi was delivered via C-section.
“I had to be put under for the delivery,” Stohr remembers. “I didn’t know if I was going to have a baby when I woke up.”
Hours after his birth, Malachi was transferred to Seattle Children’s, where surgeons closed his spinal defect. The following day, they implanted a shunt to drain fluid from Malachi’s brain.
Two months later, Malachi had heart surgery to correct a ventricular septal defect and atrial septal defect — two holes in his heart.
“I walked over 14,000 steps that day, pacing in the waiting room while Malachi was under,” Stohr said. “I didn’t know if he was going to make it. A nurse saw how anxious I was and started giving me updates on how the surgery was going. When she finally came out and told me the surgery was complete and he was okay, I just hugged her and started sobbing.”
Malachi would have another life-saving surgery when he was 6 months old after his shunt failed. At 16 months old, surgeons operated on him again, this time placing a gastrointestinal tube. After 233 days in the hospital, Malachi was finally discharged and the Stohrs returned to Yakima.
Finding their “vacation home”
Unfortunately, the transition home did not go smoothly. Between August and December 2018, the family traveled back and forth between Yakima and Seattle, sometimes two or three times per week. In mid-December, they had an emergency flight to Seattle Children’s after Malachi had a massive seizure. He was in status epilepticus for over an hour.
In January and February 2019, Malachi’s condition grew worse and he was admitted several more times.
At the end of March, Malachi suffered another seizure and was flown to Seattle again. On April 1, the family had their third emergency flight, and Malachi was admitted for what turned out to be another five-month stay.
“After that, I called Jason and told him, ‘Malachi and I are not going back to Yakima. We are staying here.’”
The Stohrs ended up moving to Auburn to be closer to Seattle Children’s. The choice to leave their family and friends in Yakima, whose support they’d come to rely on, was heartbreaking. Still, they needed to be closer to the specialized care at Seattle Children’s, which they had fondly come to refer to as their “vacation home.”
One aspect of Malachi’s care that Stohr is especially grateful for is the support they’ve received from Seattle Children’s Medically Complex Child (MCC) team, which coordinates the care Malachi receives from many different specialists.
“The MCC team is a huge safety net,” Stohr said. “I love them. They come to rounds early every morning, when Malachi is inpatient, and stay late to make sure we understand what was being said. They make a huge difference for our family.”
When kindness makes all the difference
Stohr says the kindness their family experiences at Seattle Children’s makes them feel at home, when they need support the most. The caring community surrounding Malachi’s care — from Seattle Children’s providers and nurses to volunteers and donors who support programs like Child Life — makes all the difference for the Stohrs.
“It’s the women who offer free massages and haircuts to parents, the man who goes room-to-room playing his ukulele, the team of volunteers who bring their therapy dogs to visit,” she said. “The social workers who make sure you have access to all the resources you need so you don’t fear losing your home to bankruptcy. And the nurses who show up every day with a smile on their face, who are always willing to sit down and listen to my concerns about my son and my fears about going home and leaving the relative safety of the hospital.”
Keeping Malachi safe during the COVID-19 pandemic
The Stohr family was especially concerned about Malachi this spring when the pandemic began.
“We went into complete isolation — no one in or out of our home,” Stohr said. “Like many parents in our situation, my husband and I were intent on doing everything possible to avoid a hospital admission. We both working from home. We cancelled all clinic appointments and, instead, opted for telemedicine appointments with my son’s providers.”
Unfortunately, April proved a difficult month for Malachi. He experienced three medical emergencies, two of which resulted in a paramedic response to the Stohrs’ home and an ambulance ride to Seattle Children’s Emergency Department.
“That first trip was devastating for me,” Stohr said. “We tried so hard to avoid the hospital. But when we had to be there, it wasn’t as scary as I expected. We are so, so grateful Seattle Children’s is able to keep Malachi as safe as absolutely possible.”
Malachi is now 2-1/2-years-old and learning to use his first wheelchair. While he has experienced developmental delays as a result of spending months in the hospital, he now receives outpatient therapy and education from community providers. He is also learning to communicate using sign language and alternative technologies while he practices vocalized speech.
When Stohr is asked about her son, she does not talk about his limitations. She describes his playful, cunning nature — how he will give you the “side eye” before doing something he knows he’s not supposed to do with a silly grin. She talks about how he loves the color blue and his toy giraffe. Most importantly, she describes his boundless potential.
“This little boy is absolutely amazing,” Stohr said. “He has gone through so much in such a short time, yet he wakes up with a smile on his face and goes to sleep smiling. He laughs uncontrollably and stares into your eyes in the most loving way. The thought of showing him new things and helping him reach milestones and explore the world around him keeps me moving forward.”