The first peek at her baby during the 20 week ultrasound turned from excitement to concern for Hetty Mollert.
“It was taking longer than I expected. I thought they were just being super in-depth about everything,” said Mollert, a first time mother-to-be from Madison, Wis. “Then we learned the devastating news. The ultrasound showed our baby had an opening in her spine. They believed she had spina bifida.”
The ultrasound revealed the baby had myelomeningocele, the most common and serious form of spina bifida. It’s a condition in which membranes and spinal nerves push through the opening in the spine, forming a sac and exposing tissues and nerves. This made Mollert’s baby prone to life-threatening infections and severe disabilities. The discovery launched Hetty and her husband, Tyler, on an emotional decision making roller coaster.
“I cried every night. Of all of the choices, termination of the pregnancy was not an option for us. That left us with two alternatives. We could have surgery while she was still in the womb to close the spine or we could do nothing and have surgery after she was born,” says Mollert.
The Mollert baby also had Chiari malformation, a neurological disorder related to spina bifida that pushes the brain down through the base of the skull. That condition may lead to a buildup of fluid on the brain known as hydrocephalus, which can damage the brain. Oftentimes, infants with hydrocephalus require a shunt after birth to drain the fluid.
The Mollerts did their research, and then weighed the risks and benefits. Fetal surgery would increase possibilities of preterm delivery, ruptured uterus, or death of the baby in rare cases. But, surgery after birth meant longer exposure of spinal cord nerves to amniotic fluid. That could cause more severe disabilities, including bowel and bladder disorders, mobility problems, paralysis and cognitive delays.
Approximately 1 in every 4,000 babies, or 1,645 infants every year, are born in the United States with myelomeningocele, according to the Centers for Disease Control and Prevention.
“At first we were not going to do the fetal surgery because of the risks,” says Hetty Mollert. “However, I realized that all the things I listed as cons to fetal surgery were related to my own concerns and all the pros were in favor of the baby. We chose fetal surgery, because we believed it offered the best chance of reversing the brain malformation. We thought that might improve her chances of someday being able to walk.”
Rodrigo Ruano, M.D., Ph.D., fetal surgeon and chair of Mayo Clinic Division of Maternal Fetal Medicine and Edward Ahn, M.D., pediatric neurosurgeon, performed fetal surgery to close the spine at 25 weeks of gestation. Dr. Ruano theorized that closing the spine would decrease the fluid on the brain and that the body’s amazing ability to heal might take over and regenerate the developing brain. An MRI examination six weeks later while the baby was still in the womb found that Chiari malformation had been restored after fetal surgery.
"We discovered the main benefit of this procedure is not only to close the spine, but the most important thing is to improve the brain structure and the brain anatomy," says Dr. Ruano. "Our study shows we can regenerate the brain structure so that it comes back to better development."
She’s a rock star
Mollert was able to travel back to her hometown hospital and physician in Madison for her baby’s birth. Her daughter, Madelyn, was delivered via caesarian section at 37 weeks of gestation on January 11, 2019.
“From that point on, it was like a normal baby delivered in a normal pregnancy. The closure on her back looked fantastic. She did not need a shunt to release fluid from the brain. We went home after three days. There was no stay in the neonatal intensive care unit,” says Mrs. Mollert. “Our physicians said Madelyn was a rock star.”
Madelyn has been hitting all developmental milestones. At 13 months of age, she began standing on her own. Now, she is able to walk with assistance. That gives her parents confidence that she will one day be able to walk. But there are still some unknowns. Will she need leg braces to support her steps? Or, will she need a walker? Also yet to be answered is whether fetal surgery improved chances of normal bladder and bowel function. That may not be known until she starts potty training. Indications so far are that her bladder health is on the right track.
“We just want to bask in the moment and enjoy how perfect she is now. We don’t want to worry about what might or might not happen years from now.”
Hetty Mollert believes her daughter is progressing better than if she’d had spine closure surgery after birth. She’s healthy enough to go to daycare “and loves it,” says her mother, who works in human resources for a retail company.
Madelyn Mollert is one of three consecutive spina bifida patients that Dr. Ruano studied to determine that surgery to close the spine before birth restored brain structure better than surgery after delivery. Dr. Ruano’s research is published in Mayo Clinic Proceedings.
Read the news release.
This article was previously published on the Regenerative Medicine blog.
Tags: About, Center for Regenerative Medicine, Chiari malformation, Edward Ahn, fetal surgery, Findings, hydrocephalus, maternal and fetal medicine, Mayo Clinic Proceedings, neurology, News, pediatric neurosurgery, People, republished, Rodrigo Ruano, spina bifida