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Still Don't Know If He'll Walk': Some Unknowns Remain for Fetal Surgery Even 10 Years Later -- But Here's Where It's Going

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"...we look forward to treating more and more babies before they are born.”

(Photo: Stephanie Dunn)

Editor’s Note: This is the fifth story 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.

For more than a decade, pioneering hospitals -- the Children’s Hospital of Philadelphia, Vanderbilt University Medical Center and the University of California-San Francisco -- have been conducting a novel treatment for spina bifida that many believe will someday become the more mainstream and preferred treatment over the traditional method. It is a surgery conducted in utero to close the hole in the fetus’ back before birth -- instead of after -- in the hopes of reducing some of the damage that can occur while exposed in the womb.

(Related: Exclusive: Medical Experts Explain How to Treat Spinal Defect Before a Child Is Even Born)

Last year, the National Institute of Health formally announced the success of the surgery at mitigating some of the negative effects of spina bifida after conducting a human trial. With these results made public, other hospitals have expressed interest in performing the fetal treatment as well.

Dr. Scott Adzick, the Department of Surgery Chief at CHOP and one of the fetal surgery pioneers, explained that it takes a lot of infrastructure and rigorous selection requirements to institute the availability of these surgeries. CHOP is one of the largest full-service fetal diagnosis centers in the world and has a special delivery unit that will evaluate about 1,000 mothers and fetuses as candidates for the surgery each year -- only about 150 surgeries will actually be performed.

“We have very strict criteria. We feel strongly that fetal surgery should not be done beyond 26 weeks of gestation because research has shown it does not have a significant benefit [after this point,]” Adzick said also describing a plethora of other factors that would disqualify the mother and baby from the surgery, such as high blood pressure, diabetes, other genetic disorders and more.

Currently, different hospitals have slightly different protocols for the conditions under which they’ll accept a mother for the surgery. Adzick explained that the NIH is expected to release guidelines at some point to help standardize the selection process, the procedure and treatment of the mother and baby during the time between surgery and birth.

Adzick said that for pediatric teams interested in the surgery, CHOP invites their whole team and a patient to come to the facility and takes them through their process. The selection process, prep, surgery and aftercare provided to the mother and later the child when they’re born is so rigorous that Adzick said at least so centers who have visited decided they didn’t want to conduct the surgery and would refer patients instead to CHOP. Adzick explained that it takes an extreme amount of commitment and diligence to accommodate care of the mother and fetus in this process.

Overall, when asked if this is will someday become the preferred treatment for patients with spina bifida, Adzick said it already is.

“It think it already is the preferred treatment. For candidates, it is the best standard of care option if the mother understands the risks,” he said. “There have been incontrovertible findings that there is a benefit [to treating the condition this way.]”

But even Adzick doesn’t think this treatment is the end-all be-all of care for those with severe forms of spina bifida. He said he envisions a time when the surgery will be minimally invasive. He describes hope for stem cell research to allow physicians to inject tissue that would seal the spinal lesion, potentially without even having to cut open the mother. This would allow for more patients who would otherwise be disqualified from the surgery to receive a form of fetal treatment. He also said it would allow them to treat the disorder at an earlier stage as well.

“This is going to happen, no question,” he said.

Surgery a decade later

Stephanie Dunn, only a little more than a year ago, found out her son was going to be born with spina bifida. When she first heard the diagnosis, she thought it was a “death sentence.” She didn't really know what the defect even meant or the options available to her at the time.

She soon heard of the surgery that could close the hole in her son’s spine in utero. But she didn’t know at the time if she wanted to leave her two other daughters during the surgery and recovery at CHOP and, as a teacher, she felt she “had stuff to do.”

Still, she eventually decided to go. From her surgery in May 2011 through baby Gary's birth in August, Dunn was in Philadelphia while her family was in Florida.

Even though the experts at CHOP had been performing the surgical treatment for more than a decade, the outcome of how successful the treatment was could vary. For example, some surgeries allowed the child to avoid having a shunt placed in their head to drain fluid building up on their brain -- a common result of having spina bifida -- while others still would need it. Gary was one of these children. At eight months Gary was “shunted.” He has been in the hospital six times for urinary tract infections too.

But, compared to her two older children, Dunn said the milestones have been the same. His first tooth, smile, giggle.

“Everything we’ve been through has given us a stronger bond,” Dunn said. “He is so happy, but I keep thinking of what could be coming. I still don’t know if he is going to walk or not. How will I support his confidence?”

When Dunn is feeling particularly worried over a present situation or the future with her son, she looks back at a journal she has kept since the beginning of this process with Gary and sees “how God brought me through.”

Fortunately, Dunn also has more than a decade's worth of support from other children, parents and doctors that have been performing this surgery.

The fetal surgery family

Each year, many who have undergone the fetal surgery reconvene to see how each other are doing and to welcome new members into the group. They share successes, sorrows and tips. Some recalled how years ago they would talk about the criticism they received from others, when the surgery was still experimental and controversial of an undertaking.

CHOP recently held its annual fetal surgery reunion, which includes recipients of surgeries beyond those who had spina bifida, in June with more than 1,300 people, representing only a small portion of the 12,000 who have had some form of fetal surgery.

“The fetal family reunion is our team’s favorite day of the year,” said Adzick on the CHOP website's recap of the event. “As the field of fetal surgery and therapy continues to advance, specifically in light of our recent developments in fetal surgery for spina bifida, we look forward to treating more and more babies before they are born.”

See the other stories in The Blaze's five part series on fetal surgeries as a treatment for spina bifida here.

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