Ryker Miller

After Amy and Brad Miller decided to have another child, there were surprises and shocks that followed. They weren’t expecting twins or prepared for one of them to have Spina Bifida. Amy is holding Carter and Brad is holding Ryker, who had seven surgeries in the first four months of his life. In the middle is 5-year-old McKenzy.

By Steve Raymond
News Report Staff
Brad and Amy Miller were perfectly content with having just one child.
And why not?
McKenzy is a cute, lovable 5-year-old girl. They even bought her a shirt that reads – “Only Child and Loving It!”
But as many parents do, they decided to have one more.
And their lives haven’t been the same since.
Just six weeks into the pregnancy, they discovered they were going to have twin boys, which was “quite the shock,” both parents admitted.
“When we found out it was twins, we were going to wait to tell everyone,” Brad recalled. “Nobody would have expected that, because we always said we were only having one child. But we were so shocked and surprised about having twins that we told everyone that night.”
But that is only the beginning of their story.
At Amy’s 20-week visit with Dr. Robert Frost in Altamont, he recommended that she visit Carle Foundation Hospital in Urbana just to make sure everything was okay.
That’s when she found out that one of the boys, Carter, had a club foot; and that there was an abnormal sonogram for the other baby, Ryker.
Six weeks later, they discovered Ryker had Spina Bifida.
“They did genetic testing at 20 weeks with the results coming back negative, and they didn’t see the spinal defect,” Brad said. “It was quite a shock to us.”
There are three types of Spina Bifida and Ryker was diagnosed with the most severe – myelomeningocele.
“There is normally a sheet of cells that come together to form the brain and spinal cord. Ryker’s didn’t close all the way,” Brad explained. “He had loose nerves and spinal cord outside his body, but contained within a sack of cerebral spinal fluid. They had to tuck his cord and nerves back into where they were supposed to be.”
That was done the day after Carter and Ryker were born on April 17 at Carle Hospital. Over the course of the next four months, Ryker would go through seven surgeries.
When he was six days old, a shunt was placed in his body to help drain the spinal fluid off his brain. On April 28, just five days later, that shunt was malfunctioning and needed to be removed and replaced.
Just a few days after that, Ryker began having seizures and was put on medicine.
On May 9, he was discharged from the Neonatal Intensive Care Unit and the family headed back home to Altamont. Both Brad and Amy were looking forward to returning to their normal life.
That lasted for 11 days.
On May 20, they began noticing a squeaking sound when Ryker was breathing. It’s called stridor.
“He was working too hard to breath and kept getting worse,” Amy said. “We sent a video to Dr. Frost and he recommended taking him to the Emergency Room at St. Anthony Hospital. They took x-rays and then life-flighted him to Carle Hospital.”
He was put on oxygen, given breathing treatments and then diagnosed with laryngomalacia, which is excess material on the vocal chords.
Ryker was discharged on May 22, but seemed to get worse again on the drive home. The next day, after another visit with Dr. Frost, Brad and Amy took Ryker to the ER at St. Louis Children’s Hospital. He was immediately placed in the Pediatric Intensive Care Unit.
The following day, a scope revealed Ryker had vocal cord paralysis.
“That’s what helps with speech and swallowing, but his vocal cords weren’t moving,” Brad said.
He was then diagnosed with Chiari II, which is a malformation that affects the brain, skull and spinal cord.
“This is fairly common for people with Spina Bifida. About 80 percent get this,” Brad noted. “The Chiari was putting pressure on the nerves for his vocal cords.”
On May 30, a decompression surgery – called laminectomy – was performed to make more room for his spinal cord to run through the C1, C2 and C3 vertebrae.
“They took out a small amount of bone from the back of those vertebrae to make room for expansion,” Brad said. “It was very delicate surgery.”
After a week of being intubated, the stridor came back. After a trial extubation, Ryker had a tracheotomy on June 6. That bypassed his vocal cords where the obstruction was and relieved his breathing difficulties.
About a week later, he developed severe apnea and needed a ventilator to kick in when he stopped breathing. A follow-up MRI showed he had syrinx, possibly caused by scar tissue that had built up due to previous surgeries. It was causing the spinal fluid to not flow properly.
On June 13, the surgeons sewed in a patch that enlarged the size of his dura, which encapsulates the brain and spinal cord. And on July 12, the final surgery, a G Button was installed in his belly button. Ryker is fed through that.
Ryker left the hospital on July 19.
“I think we hit the Spina Bifida lottery,” Brad said. “He’s certainly been through a lot. Thankfully, the defect was small and located in the lowest part of his back.”
Today, Ryker still has the tracheotomy, but Brad and Amy are hopeful he will not have to do that forever.
“There is a one-way valve they can get him that will force him to exhale through his mouth,” Brad pointed out. “He will have to be able to do that to speak.”
Even though he’s relearning how to suck swallow and then breathe, he can take about 2 ounces of formula through a bottle. But the rest of his food goes through the G Button. He has to wear a Pulse Ox around the clock. That monitors his blood oxygen and pulse. And he is on oxygen while he sleeps.
He also receives four types of therapy – speech, occupational, physical and developmental. Brad and Amy are pleased with the progress he’s making.
“It does require time,” Amy said. “We clear his trach out and watch his numbers every day. We also change the trach ties around his neck and clean the G Button every day.”
“He’s a pretty happy baby. He smiles a lot,” Brad added. “But there’s no middle ground with him. He’s either real happy or real mad. When he’s tired or hungry, that’s when he gets the maddest. But for having seven surgeries, he’s a real happy baby.”
Brad and Amy don’t know what the future holds.
“Spina Bifida doesn’t affect the mental abilities,” Brad explained. “It’s more a question about mobility. Will he be able to walk, use a walker, need a wheelchair? We don’t know at this point.
“But we’re very optimistic,” he added. “Ryker can raise and lower his feet and seems to have bowel and bladder control. Those are both good signs.”
Within a year, the couple is hoping the tracheotomy can be removed or at least there’s a plan to get it out, as well as the G Button and the shunt.
“We know that’s a long shot, but that’s what we’re praying for,” Brad said.
“There are people that actually terminate their pregnancy when they find out their child is going to be born with Spina Bifida. That’s just not necessary,” he added. “I think Spina Bifida gets a bad rap. I don’t think it’s as bad as people make it out to be.”
The Miller family spent 57 days in St. Louis; 52 of those at the Ronald McDonald House.
“It was an emotional rollercoaster,” Amy admitted. “We had good days and bad days. But we couldn’t have got through it without all the support we received from family and friends. There are so many people out there that have cared for us in a variety of ways. We can’t thank them enough.”
That support has come in the form of a benefit, plus financial donations from family, friends and businesses.
There is a Go Fund Me account for Ryker, plus an account in his name at First Mid-Illinois Bank & Trust. If you want to follow Ryker’s story, go to his Facebook page – Ryker Miller’s Journey.
Ryker’s next appointment is set for September 11 in St. Louis.
“Right now, the prognosis looks good,” Brad said. “As he grows, we realize things can change. And so far, it’s been surprise after surprise after surprise with him.”
“It was the shock of our lives,” Amy added. “But we wouldn’t trade him for anything.”
(P.S. – Carter is also doing well. He did pay a visit to Shriner’s Hospital in St. Louis. He has muscle tightness due to the way his feet were positioned during the pregnancy. Daily exercises are helping straighten the feet out.)