Wellington Regional Medical Center is one of two hospitals in the United States that is currently studying a new minimally invasive, in utero, surgical technique to treat babies that have been diagnosed with open spina bifida, one of the most common birth defects.
The hospital’s fetal surgery program, which is led by Dr. Ruben Quintero, has been approved for a Phase 1 clinical trial of a fetoscopic surgical option to treat open spina bifida while the baby is still in the uterus. Quintero collaborated with a team of doctors from Brazil to develop the new minimally invasive approach that is the current focus of the study.
Although open surgical intervention for open spina bifida in utero has been available for more than 10 years, in Quintero’s recently developed minimally invasive fetal surgery, physicians can reach the baby and perform the necessary surgery to treat the condition using thin endoscopes through only a few small skin incisions each less than a quarter-inch long. The fetoscopic approach is less invasive than the open fetal surgery approach, which requires surgically opening the mother’s abdomen and uterus.
“This is a promising option for families who are potentially facing the often debilitating, life-long effects of open spina bifida,” Quintero said. “Studies have shown that performing open surgery for spina bifida before birth, instead of waiting until after the baby is born, is better for the baby. This specific study is to help determine if this minimally invasive approach is as good for the baby, and better for the mother, than the open fetal surgery approach. The studies we performed in Brazil have been very promising.”
The fetoscopic approach is not only potentially better for the current pregnancy, but it also reduces the risk of uterine rupture in subsequent pregnancies, since the uterus is not opened. Other benefits for mothers include less blood loss, faster recovery time and the opportunity to deliver the current and any future pregnancies through normal methods, not Caesarean section.
Spina bifida, which means “cleft spine,” is a condition where the spine and spinal cord do not form correctly. It can happen at any location along the spine and occurs when the tissues covering the spine do not close properly. The opening can expose the spinal cord and nerves to fluids during fetal development, potentially causing damage to those sensitive structures.
Spina bifida is one of the most common birth defects, affecting an estimated 1,500 births in the U.S. per year, which is seven out of every 10,000 pregnancies. In total, there are an estimated 166,000 people who live in the U.S. with spina bifida. Spina bifida’s impact on physical or mental capabilities can range from mild to severe.
There are three main types of spina bifida:
Myelomeningocele — Considered the most severe form of spina bifida, babies who suffer from myelomeningocele have a sac of fluid that comes through an opening in the back. Located in the sac are parts of the baby’s spinal cord and nerves and they are often damaged. People who suffer from this version of spina bifida can have issues with walking, feeling their legs or feet, or using the toilet.
Meningocele — In this form of spina bifida, the spinal cord is not in the sac coming through the opening in the back and there is usually little to no nerve damage. Meningocele often results in less significant disabilities.
Spina Bifida Occulta — This is the mildest version of spina bifida and is usually not discovered until late childhood or even earlier adulthood. With spina bifida occulta, patients do not have a sac or an opening in the back. Sometimes known as “hidden spina bifida,” patients have a small gap in the spine and usually do not have any disabilities from the condition.
In addition to Quintero, fetal surgeon Dr. Eftichia Kontopoulos is a co-investigator in the study at WRMC.
For a referral to the fetal medicine program at WRMC, call the free physician referral service at (561) 798-9880. The trial is also listed on the clinical trials registry at ClinicalTrials.gov at https://clinicaltrials.gov/ct2/show/NCT03856034.