Exclusive: Inside the Once Controversial, Life-Changing Fetal Surgery Used to Treat Spina Bifida

Editor’s Note: This is the first in a five part series where The Blaze has looked into a newer treatment for children diagnosed with spina bifida. While most would have the hole exposing his or her spine closed after birth, more than a decade ago surgeries that were considered controversial at the time began where the hole was closed in utero in the hopes of reversing some of the disabling effects of the disorder.

The first results of a federally funded human trial were released in 2011, showing the success seen in the new treatment thus far. We’ve talked to families who had the elective surgery before it ever entered a formal human trial and those who more recently have had the surgery since the period trial ended. We’ve timed this series to specifically run close to Glenn Beck's Restoring Love as the parents of children who underwent the surgery, many of whom still have some disability, want the world to know the blessing of celebrating differences.

Autumn Lubbers is going into the eighth grade. She played soccer for a year, runs on a track team and loves to swim in the summer months. She also plays piano.

A little more than 13 years ago, her mother Marsha Anderson (at the time her last name was Lubbers) sat in a doctor’s office waiting to learn the sex of her baby and ended up learning more than she bargained for. If Marsha had her daughter even a year before she did, Autumn may not be the same teenager she is today. Autumn might still have enjoyed science and math; her personality might have been the same. She would have been considered cognitively “all there.” But the sports activities listed above, pressing the pedals at the base of the piano, even walking in general might not be happening in the capacity they are today.

As a fetus, Autumn was diagnosed with spina bifida, which is a congenital disorder where the neural tube does not close before birth, resulting in a cascade of problems that range from hydrocephalus (water on the brain), an impaired ability to walk (if at all) and some incontinence.

Autumn still has spina bifida, but she also was number 29. This number indicates a surgery, which Marsha believes changed the quality of her daughter’s life for the better.

‘This is hope’

In November 1998, Marsha was between 18 and 19 weeks pregnant. Her physician wasn’t animated or excited throughout her ultrasound though -- and there was a reason.

Marsha recalls how little was explained to her about the diagnosis she received of spina bifida at that appointment. She was sent to a genetic counselor and was given a pamphlet on spina bifida with “horrible statistics based on 1960s data.” Feeling lost and needing more information, like most parents would do today, Marsha went online. There she stumbled on information on the first fetal surgeries as a treatment for spina bifida.

At the time, elective fetal surgeries where the child was not in a life-or-death situation were just not done, so this practice was considered controversial.

Armed with this information, Marsha went back to the doctor she had first seen about spina bifida and asked about the surgery, which at the time hadn’t even entered the NIH trial.

“He said to me, ‘I had the feeling you were one of those parents,’” Marsha said “This was my only hope at that point. I thought ‘you gotta try.’”

From there it was a whirlwind. Calls were made to Vanderbilt. The Anderson family quickly made their way to Nashville where they spent two days hearing everything that could possibly go wrong with the surgery -- in addition to what could go right -- and how Autumn didn’t need the surgery now. She could have the same thing done after birth. But could doing it before make a difference?

Spina bifida is necessarily not life threatening. Having a major, elective operation that went through the mother to get to the fetus is risky. Although any surgery is risky. But it was a risk Marsha -- and several others at the time-- decided was worth taking.

“Even after all that, I still felt pretty good about going through with it, but it was still scary,” Marsha said. "What they told me my daughter would have to deal with her entire life is horrible, and this is hope.”

At 23 weeks, Marsha’s womb was cut open and the same operation that would happen to any baby with spina bifida outside the womb took place with the baby still in it. A little more than 10 weeks later on Feb. 19, 1999, Marsha delivered in their hometown.

With doctors in the area not as familiar with the new surgery, Marsha had a letter from Vanderbilt that her daughter was not to have a shunt placed in her head. A shunt is an pump or drain that is inserted at the location where cerebrospinal fluid backs up (a condition known as hydrocephalus) due to a Chiari malformation, which is improper formation of where the cerebellum should sit at the base of the skull, causing this blockage. There were many goals with the surgery, but the main one was to reduce the likelihood of the child needing a shunt by reversing Chiari malformation before birth. Shunts often get blocked themselves or infected. They sometimes need to be replaced and. according to several parents, are generally the bane of a child with spina bifida.

What doctors were beginning to see in this time before the NIH trial was that in sewing up the child’s back in utero, the Chiari malformation began to reverse and there was less of a need for shunts.

‘I walk a little funny, so what?’

Anyone in what is called the “fetal surgery family” will tell you that fetal surgery is not a cure to spina bifida. It is only moving up a treatment the child would otherwise have had outside the womb in the hopes the early repair could protect the spine from further damage in the womb.

Marsha calls her first nine months with Autumn a honeymoon period. She acted no different than any of her other children. It was only when some milestones reached at a certain age by her other children began being missed that Marsha really remembered how different Autumn was. At the time knew really what to expect of children who had undergone fetal surgery as a treatment.

Around 21 months, Autumn began walking with a walker. Today, Autumn wears ankle braces for support. Some children with spina bifida who received treatment after birth have braces on their legs as well. For family outings that require more intensive walking, Autumn uses a wheelchair.

Many of Autumn’s classmates do not know she has bifida or notice that she wears braces. If someone says something about it, Autumn retorts: “I walk a little funny, so what?”

Still, her condition is not without its complications. In April, Autumn suffered a severe infection that Marsha said showed them again the “grave reality” Autumn’s condition at times, “even if her surgeries have corrected most of what makes her different on a daily basis.” The urologist Autumn visited in Oklahoma City told Marsha complications that Autumn suffered at the time used to kill those with spina bifida, but now they have a “nice bag of tricks” to remedy most situations.

“Those words are still very heavy on my heart,” Marsha said.

Autumn does have some close friends with whom she trusts some of the more private details of her condition. She has a friend at school who also has spina bifida, with whom she can relate.

“I just walked up to him, said ‘hi’ and showed him my braces,” she said. “As a friend, I just think of him as a normal friend, but having him makes me feel better.”

‘I feel really grateful’

Autumn recognizes the sacrifice her parents have made to make her life easier in the long run. Marsha, like many parents of children with disabilities, emphasized how difficult it is on a marriage. She and Autumn’s father ended up getting divorced. Marsha has since remarried.

Autumn recalls when she went to camp a few years ago in Arizona where there were many kids with different levels of spina bifida.

“I was the only one there who could stand up without a crutch,” she said. “I feel really grateful for all that my parents have done for me. My life could have been a lot worse.”

What would Autumn say to other kids with spina bifida -- fellow fetal surgery babies or not?

“You have to know there is a lot of different things you’re going to have to do, but I feel better because I know Christ has a plan for me.”

Stay tuned for the second part of this five part series tomorrow where the Blaze will cover the scientific aspects of spina bifida, the surgery, and the clinical trial recently ended to its success.