Parents share story of in-utero Spina bifida surgery in St. Loui - KMOV.com

Parents share story of in-utero Spina bifida surgery in St. Louis

Posted: Updated:
Jackson made his world debut just before Christmas (Credit: KMOV) Jackson made his world debut just before Christmas (Credit: KMOV)

ST. LOUIS (KMOV.com) -- A team of doctors was able to change a little boy’s life before he was even born by performing the first in-utero Spina bifida surgery at Barnes Jewish and St. Louis Children’s hospitals.

Baby Jackson made his world debut just before Christmas.

“We got to take him home on New Year’s Day, so that was exciting,” said Jackson’s mom, Joni Reinkemeyer.

But, Jackson was in doctors’ hands months before that.

“They have a butt day and a birthday, because you came out twice,” said Reinkemeyer as she looked at her son.

At 25 weeks, the team from Barnes Jewish and St. Louis Children’s hospital performed in-utero surgery on the little boy diagnosed with Spina bifida. His mom continued to carry him 35 weeks before he was born.

“The abnormality for this baby was such that it would have affected his ability to stand and walk and now the hope is this will be a baby that will be able to walk independently,” said Dr. Michael Bebbington, director of the Fetal Care Center of Barnes-Jewish Hospital, St. Louis Children’s Hospital (SLCH) and Washington University.

“It was a lot to take in at first. It was a lot of information, a lot of risks, a lot of benefits if we qualified and could go through, which we did,” Reinkemeyer said.

When a baby, like Jackson, has Spina bifida, the bones and skin around the lower part of the back don’t fully form in the womb. The spine is exposed to the amniotic fluid in utero and that causes significant nerve damage. So, the sooner the hole can be closed, the less damage. Still, the timeline is sensitive because the fetus has to be far enough along that the tissue can handle the procedure, but also not too close to birth because it needs time in the womb to heal and realize the full benefits of the surgery.

This Columbia, Missouri family was an ideal candidate for the surgery, with both mom and baby being in good health. Still, the surgery takes a toll on the whole family because mom is on bed rest for weeks and needs to be near her medical team in case of an emergency. That is one reason it is so significant that this in-utero surgery is now available at Barnes-Jewish.

“It never ceases to amaze me what mothers will do to try and give their children every benefit in life and the moms undertake a lot of risk to have this kind of surgery,” said Dr. Bebbington.

Closing that hole in-utero changed Jackson’s life.

“Being able to avoid brain surgery and increase his chances of walking were all big factors for us,” said his dad, Chris Skain.

“Bowel and bladder movements, they didn’t know for sure if that could be a benefit but it did end up a benefit for him,” said his mom.

Jackson was born with clubbed feet and already started therapy at home. Still, his parents feel like the benefits far outweighed the risks in their situation.

“It was a long journey but it was all worth it,” said Reinkemeyer.

Copyright 2018 KMOV (Meredith Corporation). All rights reserved.

Powered by Frankly