How Mary Bridge cares for children with complex medical needs
By Kortney Scroger
Lindsey Topping-Schuetz was told in December 2015 that she may never get pregnant without medical help. But just as she was beginning treatment, she was shocked to find out during a routine ultrasound that she was going to be a mom.
Her excitement turned to fear and confusion at her 20-week ultrasound when she learned that something might be wrong.
“Our whole life became waiting for a phone call,” she says.
That phone call came while Lindsey was at work. Lindsey and her husband, Ben, were told that their baby boy had Cri du Chat Syndrome — caused by the partial deletion of the 5th chromosome, as well as an extremely rare duplication of the 17th chromosome.
Cri Du Chat Syndrome can cause delayed speech and cognitive abilities, weak muscle tone and feeding issues.
Because of the rarity of his diagnosis, there were more questions than answers for Lindsey and Ben. That’s when they were introduced to the Mary Bridge Pediatric Complex Care Support Team, led by David Brunelle, MD, and Jennifer Kett, MD.
Complex Care is a service offered for families with children diagnosed with life-limiting or life-threatening conditions. The goal of the Complex Care team is to educate and empower families to be their own advocates.
The team meets with families and their medical providers to strengthen lines of communication and help make their medical journey as seamless as possible. Their work crosses a wide spectrum of daily tasks: reaching out to specialists, answering tough questions, providing emotional support on difficult days and helping families plan for what might come next.
“The name ‘Complex Care’ speaks to the fact that families we care for are in a complicated place,” Dr. Brunelle explains. “We are here to help them learn and advocate for themselves. I tell families, ‘I don’t know what your journey will look like, but you will not be alone.”
The team helps fill in the gaps, says Dr. Kett.
“We help families consider the big picture,” she says. “Managing a complicated diagnosis is very difficult for families — we make sure families get what they need on a day to day basis.”
Dr. Brunelle introduced Lindsey and Ben to the group of specialists that would help take care of their son as soon as he was born.
“He acted as our own personal translator,” says Ben. “Dr. Brunelle walked us through the entire process. He made the medical issues something we could understand.”
Three days after meeting Dr. Brunelle, Lindsey had to have an emergency C-section at 34 weeks. Owen Schuetz was born on September 29, 2016, at 4 pounds, 5 ounces. He spent his first 103 days of life in the Level IV Neonatal Intensive Care Unit (NICU) at MultiCare Tacoma General Hospital.
Owen’s long stay in the NICU was not without complications. The Complex Care team stood by the family’s side every step of the way.
“Dr. Brunelle and Dr. Kett made it feel like family was there,” Lindsey says. “Having someone who can teach you and hold your hand is huge. The team was there for us emotionally.”
On the day of Owen’s graduation from the NICU, staff lined the hallways to cheer Owen, Lindsey and Ben as they moved to the next phase of their journey.
The Complex Care team is still a part of their lives. Owen struggles with low muscle tone, which affects his ability to protect his airway, and he requires a feeding tube. The family’s schedule is filled with appointments — from physical therapy at Mary Bridge Good Samaritan Children’s Therapy Unit to regular visits at the Mary Bridge Gastroenterologist Clinic. Sometimes Owen makes unexpected trips to the hospital.
“There have been several times where things have come up unexpectedly and the Complex Care team has been there,” Lindsey says. “You have this group of people and they become your superheroes.”
Learn more about Pediatric Complex Care at Mary Bridge
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