Each year, 1,500 babies are born with spina bifida. About 10 percent do not survive, and many of those that do will deal with lifelong complications.
However, doctors at Children’s Hospital Colorado are changing that by operating on the fetus before the baby is even born.
“What we deal with here is quite rare, but not rare to us,” Dr. Ken Liechty, a pediatric fetal surgeon for Children’s Hospital Colorado, said.
Doctors aren’t certain what causes spina bifida, saying it appears to result from a combination of genetic and environmental factors. For some, it means a lifetime of complications, but for others, staff at Children’s Hospital Colorado are able to offer a different outcome.
“You can imagine, there’s nothing more devastating when you go to those 20-week ultrasounds and you’re expecting to get these beautiful shots of your baby and maybe you’re going to find out the sex, and instead you find out that this baby has a devastating congenital anomaly,” Liechty said.
Kyle and Alison were 19 weeks pregnant when they found out that their baby girl, Peyton, had myeloschisis, the most severe form of spina bifida.
“That is probably the hardest thing you can hear,” Alison said. “It felt like someone had punched me in the chest because it was just, I had no idea it was coming, and so it was pretty hard to hear.”
Doctors explained that a portion of Peyton’s spinal cord was exposed in the womb, meaning her nerves were vulnerable to damage and she was at risk for developing hydrocephalus, or fluid on the brain.
“One defect that leads to a lot of devastating complications,” Liechty said. “The need for a shunt, problems with walking, ability to independently ambulate, problems with bowel and bladder function that can affect them later on in life.”
The couple was living in Arizona at the time, but their doctor referred them to the Colorado Fetal Care Center at Children’s Hospital in Aurora. That’s where they learned that doctors could repair Peyton’s spine, while she was still in the womb.
“In this procedure, our highly specialized team goes in and opens the uterus and operates on the fetus, and that’s done early in gestation, around 23 to 26 weeks,” Liechty said.
“I was real like ‘what?’ That does not seem like it’s a normal thing,” Kyle said.
Alison explained how the surgery works.
“They cut your belly open and they bring her little back up and they hold her, and they don’t completely take her out of the womb,” she said. “They just hold her and patch it and sew it and put her back in, and then somehow put everything back together.”
Like with any surgery, there’s risk involved, but the outcomes have the potential to be life-changing.
“If you do nothing and these babies are born, about 90 percent of them are going to need what’s called a ventriculoperitoneal shunt, which goes from the ventricles in the brain down into the abdomen,” Leichty said. “So it’s a piece of plastic that carries fluid from the brain to the abdomen, and these babies need to have these revised repeatedly. It’s a lifelong, once you have it, you have it, you don’t get away from it.”
Liechty said babies who have the defect repaired in utero may never need a shunt.
“If you repair these in utero, that shunt rate drops to 40 percent,” he said. “So it’s not zero, but it cuts it well in half.”
He added that in the most ideal candidates, that shunt rate drops to as low as 25 percent, and doctors discovered that those who had fetal surgery were more likely to be able to walk independently than those who didn’t.
“We both knew that’s exactly what we wanted to do,” Alison said. “We wanted to give her the best chance that we could.”
Just shy of two years old now, Peyton is progressing beautifully.
“She did very well with the procedure and met all the milestones that we would expect,” Liechty said.
“She’s had no shunt, no ETB, which is very common in kids with spina bifida, and glory to God she is almost going to be walking soon,” Alison said.
“She’s a miracle baby,” Kyle said. “I mean, you wouldn’t know the difference from any baby, really.”
Their family has come a long way from one awful afternoon.
“That is the worst day of your life, is hearing that your child has a disability, and it gets so much better from there,” Alison said.
“It’s not a fun day, obviously,” Kyle said. “But after you’ve lived through it, it’s kind of like ‘ok, that was not that bad.'”
They know there will be more challenges ahead, but they are confident Peyton will make her own way and prove that perfect comes in all shapes and sizes.
“She’s a spitfire,” Alison said. “She’s very loving and sweet, but she also has determination when she wants to do something, and so really whatever she wants to do, she’s going to do. I really believe that.”