The Miller Family
“(The Division of Specialized Care for Children) has been a saving grace."”
— Ryker's dad, Brad Miller
“DSCC has been there through all of it”
Watching your child take their first steps is an emotional moment for any parent.
For Brad and Amy Miller, the milestone represented all the obstacles their son Ryker has overcome in his short life.
Ryker, age 3, was born with spina bifida and a structural defect in his brain called Chiari malformation. He’s had 11 surgeries, a tracheostomy, a gastrostomy tube and many hospitalizations.
In May 2020, Ryker took his first steps without assistance. (See video below.)
“It might look like nothing to most, but for Ryker and children with spina bifida, this is huge,” Brad Miller said.
The Millers want to share Ryker’s journey to help educate others about spina bifida and provide hope for other families.
Brad and Amy Miller had a 5-year-old daughter when they became pregnant with twin boys, Ryker and Carter. At the twins’ 26-week appointment, they learned Ryker had spina bifida.
“We didn’t know anything about it at the time,” Brad recalled. “We thought it was a death sentence.”
Spina bifida occurs when the spine and spinal cord don’t form properly. Ryker had the most severe type in which the spinal canal is open along the lower back, forming a sac. Additionally, Ryker had hydrocephalus, the buildup of fluid in the brain.
Ryker had surgery to close his spinal canal shortly after birth. He also had a shunt surgically inserted to drain the excess fluid from his brain.
Later, he started having difficulty breathing.
Ryker was transferred to St. Louis Children’s Hospital, where he was diagnosed with Chiari malformation. Chiari malformation is a condition in with brain tissue extends in the spinal canal.
Worried that Ryker would not be able to breathe on his own, doctors performed a tracheostomy.
Ryker also underwent a duraplasty. In this procedure, a surgeon opens the cover of the brain, called a dura, and sews a patch on it to make it bigger. This surgery relieves pressure on the brain.
“They did the surgery but were not optimistic it would help,” Brad recalled. “Lucky for us and for Ryker, it actually did help, and he started to breathe on his own again.”
“A saving grace”
Ryker spent the first three months of his life in the hospital, including 56 days in the pediatric intensive care unit at St. Louis Children’s.
The Millers struggled with how to balance staying with Ryker in the hospital while also caring for another newborn and a 5-year-old daughter at home.
During that time, Brad said the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) provided invaluable help.
DSCC covered the cost of the suggested donation for the entire Miller family to stay at the Ronald McDonald House during Ryker’s hospitalization at St. Louis Children’s.
“That was a saving grace for us, so we could actually be together at night as a family of four and spend every other waking minute at the hospital with Ryker,” Brad said. “I don’t know how we would have done it without that (assistance).”
DSCC continued to support the Millers as they navigated Ryker’s homecoming and learning his long-term care needs.
“He’s had a lot of follow-up appointments, and DSCC has been there through all of it,” Brad said.
Many of Ryker’s specialists are based outside of the Miller’s hometown, more than an hour’s drive away.
DSCC has helped arrange hotel stays if the family has an early appointment and has helped coordinate different providers’ schedules to find the best options for Ryker and the Millers.
“DSCC has been a saving grace in just the logistics of trying to do scheduling,” Brad said.
“An amazing team”
With each passing year, Ryker continues to grow stronger and is now preparing to attend preschool.
He also receives therapy to help him become more mobile. He can walk with the assistance of his walker or crutches.
“He’s really determined but lacks confidence in standing and walking,” Brad said. “But when he sets his mind to it, he makes good progress.”
One evening in mid-May 2020, Ryker took several unaided steps to Brad. His mom, Amy, captured the moment on video (see below).
“It was very emotional and basically a long-time coming,” Brad said. “We are well aware of other kids with spina bifida who will never walk, never take a step, even with a walker.”
Still, Brad wants parents to know that spina bifida is manageable and not the “death sentence” he and Amy initially feared.
“He can do a ton of things. He’s always smiling, and he will melt your heart,” Brad said.
The family created a Facebook page called Ryker Miller’s Journey. The page provides regular updates about Ryker’s medical procedures and overall life with spina bifida.
“It sounds like a horrible diagnosis, but it doesn’t have to be,” Brad said. “Use your instincts and don’t let anyone tell you what your child is or isn’t going to do.”
Going forward, Brad said he and Amy want to do whatever they can to help support Ryker’s independence.
“We are so proud of him. For those first three months (of Ryker’s life), it was a blur. I honestly don’t know how we survived it, but we did. It’s made us stronger as a family and as individuals,” Brad said.
“We want to thank everyone at DSCC and give a big shout-out to Ryker’s entire medical team, from the doctors, nurses and therapists. We are lucky to have an amazing team on Ryker’s side.”