Spina bifida is the most common neural tube defect in the United States, affecting approximately 2,000 live births in the country every year.

Here, Ramesha Papanna, MD, MPH, answers questions about the condition and innovative treatment options to improve outcomes. Dr. Papanna is a professor of maternal-fetal medicine at McGovern Medical School at UTHealth Houston, and co-director of and affiliated with The Fetal Center at Children’s Memorial Hermann Hospital.

Question: What is spina bifida, and how does it affect a child’s health?

Answer: Spina bifida is a birth defect that’s essentially an opening in the spine that exposes the spinal cord to the outside. Very early in a pregnancy, there’s a process called neural tube formation, when the brain and spinal cord develop. If that process isn’t complete, you end up with spina bifida.

A child born with spina bifida typically has long-term problems with the function of the spinal cord below the level of the opening. That means problems with walking and sensation in the legs. It can also affect bladder and bowel function. Over time, they may end up needing dialysis or kidney transplants.

Q: How have treatments for spina bifida evolved over the years?

A: The first surgical treatments were done about 100 years ago, when surgeons started closing the defect after birth. That’s when children with this condition started to grow into adulthood, but with significant disability.

More recently, we realized that throughout the pregnancy, the damage to the spine was getting worse. That’s because the spinal cord was being exposed to the amniotic fluid, which is primarily the baby’s urine, and that causes continuous damage. In 2011, a major study showed that if you repaired the bifida before birth, it would lead to better outcomes after birth. That was a major milestone.

But the surgery is risky for the mother. It’s a three-to-four-inch incision in both the abdomen and the uterus, and then a neurosurgeon can close the bifida. It’s a long recovery for the mother, and they can’t deliver vaginally because the scar can rupture. They also have to stay within 30 minutes of the hospital throughout their pregnancy.

And while this approach has helped many patients, it doesn’t entirely eliminate the damage to the baby’s spine. In spite of repair before birth, more than half of these children can’t walk on their own at 30 months, and three in four cannot walk at school age. It’s better than post-natal repair, but it’s not a cure.

Q: What approach do you use at The Fetal Center at Children’s Memorial Hermann Hospital?

A: We are trying to improve outcomes for both the mother and the baby. Using fetoscopic surgery, instead of making a big hole in the uterus, we make three tiny holes. Through those tiny holes, we can close the defect while reducing the risk of uterine rupture. That means the mother can still deliver vaginally and she doesn’t have to stay within 30 minutes of the hospital.

Through our research at UTHealth Houston, we also learned that the reason more than half of the children treated with traditional surgery can’t walk at 30 months is that the surgery creates a scar, and that scarring can damage the spinal cord. So we came up with a solution: a patch made of donated healthy human umbilical cord, which helps reduce scarring and improve regeneration of the tissue.

We did over 10 years of research before studying it in humans — a lot of testing, a lot of practice, a lot of models. The first surgery using an umbilical cord patch was done September 1, 2020, at Children’s Memorial Hermann Hospital. That child is now 18 months old and is already walking, with good bladder and bowel function.

We have done 33 of these surgeries so far and are seeing the children as they grow to assess the success of the patch. We’ll do assessments at one year, 30 months, and 50 months. None have had major complications, such as death, infection or rejection of the patch.

Q: What does the future hold for people with spina bifida?

A: In the world of spina bifida, this is a time of real innovation. We were the first to use this particular approach with the human umbilical cord patch, but there’s research happening around the country and around the world. People are trying to improve treatment in all different ways, and that will make outcomes better and better.

At The Fetal Center, we are making changes in our approach based on what we’ve learned. For one, we’re starting to do these procedures earlier in the pregnancy to minimize the damage to the spine. We’re also moving to a new approach where we don’t have to open the abdomen first, which would make recovery faster for the mother.

Located within the Texas Medical Center, The Fetal Center is affiliated with McGovern Medical School at UTHealth Houston, UT Physicians, and Children’s Memorial Hermann Hospital. For more information, visit memorialhermann.org/fetal.

Photo courtesy of Memorial Hermann

Wyatt, a fetoscopic spina bifida repair patient, with Dr. Ramesha Papanna.