The Future of Healing for Neural Tube Defects: Fetoscopic Repair of Spina Bifida

Patient Stories

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Like most first-time parents, Johnna and Adam Kerres of Rock Island, Illinois, were excited to mark every milestone of their pregnancy. Until, that is, an ultrasound at 18 weeks revealed their baby boy Everett had spina bifida.

The initial prognosis they received was dire. A doctor told them Everett would likely never walk and would be severely brain damaged. Stunned, the Kerres put their plans for nesting and getting ready for their new family on hold while they researched more about the condition.

Luckily, the Kerres didn’t stop with that initial diagnosis. They began calling fetal centers around the country including Texas Children’s.

“Two prominent Texas Children’s surgeons, Dr. William Whitehead and Dr. Michael Belfort called us from a personal cell phone while they were standing in Dr. Whitehead’s kitchen,” recalled Johnna. “We were just blown away by that. They answered all our questions and that conversation gave us the hope we needed.”

After that call, the Kerres chose Texas Children’s. Johnna and Everett would undergo fetoscopic surgery to repair the spina bifida defect in the hopes of improving Everett’s health long-term.

At 24 weeks gestation, Dr. Belfort, OB/GYN-in-chief, and Dr. Whitehead, pediatric neurosurgeon, worked in tandem with a large multidisciplinary fetal surgery team to perform this minimally invasive fetal surgery they’d pioneered.

The team first made an abdominal incision to expose the uterus. Then they lifted the uterus so it was outside the abdomen, removed the amniotic fluid and replaced it with carbon dioxide gas. They put ports into the uterus; inserted scopes and instruments through them; and performed endoscopic, or keyhole, surgery to repair the defect in the fetus’ lower spine. They dissected the membrane attached to the exposed spinal cord and then sutured the remaining skin together to cover the spina bifida defect to protect it from further exposure to the amniotic fluid. Then the uterus was returned to the abdomen; the abdominal incision was closed; and Everett’s gestation resumed normally.

“Fetoscopic repair of spina bifida offers the promise of dramatically better outcomes in terms of reduced long-term complications in mobility and bladder function,” says Dr. Belfort. “We’re working hard to get the word out to OB/GYNs everywhere that this surgery exists so we can hopefully help many more children like Everett.”

Due to potential complications and frequent monitoring, Johnna could be no more than 15 minutes from Texas Children’s delivery room and her doctors for a long period of time, so they packed for a temporary move to Houston.

“It was tough being so far away from home during the second half of my pregnancy. I didn't really get the experience every mother sort of dreams of....like decorating the nursery, being around all of our family and friends as my belly grew, having a baby shower before Everett was born,” said Johnna. “However, friends and family came to visit, and living in the Ronald McDonald house was a life changing experience.”

In addition to having volunteers cook almost all their meals, Adam and Johnna bonded with four other families who had the same surgery for spina bifida. Another bright spot came from the weekly sonograms that monitored Everett’s progress.

“I literally got to watch my baby grow from week to week,” said Johnna.

The sonograms showed that Everett had a club foot, but his knee movement meant he would likely be able to walk. Later, an MRI scan showed that Everett’s cerebellum, which had bulged out of place prior to surgery, had moved back into its proper place. This meant he most likely would not need a shunt to drain excess fluid from his brain, another sign that brain damage had been minimized by the surgery.

“Everett’s repair was one of the best reversals I’ve seen since we’ve been performing this intervention,” said Dr. Whitehead. “The outcome was remarkable.”

Everett John Kerres was born at 39 weeks and 1 day, and spent only one week in the NICU. The family went home, and at 3 months, Johnna and Adam began catheterizing Everett every three to four hours to help with a condition called neurogenic bladder.

Treatment to correct his club foot began at home, and he now sees a physical therapist and developmental therapist to assist with his various ongoing health needs.

The Kerres plan to meet soon with one of the families they bonded with during their stay in the Ronald McDonald House, a couple who was coping with the same diagnosis. Meanwhile, Everett is growing into a happy and bubbly boy who is trying to crawl and thinks sneezes are hysterical.

“As a small town girl from Illinois, never in my life could I have imagined that my son and I would be contributing to medical research,” says Johnna. “It makes me proud to know that our surgery can help other families. We are forever grateful to the entire team at Texas Children’s.”