When her unborn child was diagnosed with spina bifida, Lexi Royer, underwent an experimental fetal surgery. Three months later, after a natural birth, a miracle occurred: Baby Royer kicked his legs.
“I’ve never seen a such a big defect successfully repaired, with the child moving his feet at birth,” says Dr. Larry Hollier, surgeon-in-chief at Texas Children’s Hospital. “It’s unbelievable. If this is the cost of getting that [spine] closed—just having to do a little skin operation—it’s fantastic.”
What is Spina Bifida?
Spina bifida is a type of spinal birth defect. When a fetus’s vertebrae don’t form correctly around the spinal cord, they begin to develop outside the body. Depending on the case, spina bifida can be mild or severe.
A mild case is fairly common and usually causes no issues. The spinal cord and structure are in the body, but the bones in the lower back area do not form normally. The child may have a dimple, hairy patch, or birthmark on his back, and sometimes nothing at all.
A less common form is called meningocele, where spinal fluid leaks and presses against the skin, creating a bulge in the back. This bulge contains no spinal cord or nerves, and there are usually no other negative symptoms.
A rare and severe case is called myelomeningocele. Most people remember these symptoms when they think of the disease. A section of spinal nerves is pushed out of the canal and damaged. There might be a bulge in the back, or in some cases, the skin is broken and the nerves are exposed outside of the body.
The cause of this defect is unknown, but experts suspect genes and the fetus’s environment. For example, it’s more common for a woman to bear a baby with this defect if she had another child previously with it, or if she is obese.
The symptoms vary from child to child. As mentioned, mild cases often don’t have any negative symptoms. The most severe cases, however, may suffer from the following:
- Little or loss of feeling in their limbs, and unable to move those parts of the body
- Bladder and/or bowel issues, such as constipation and leaking urine
- A buildup of fluid in the brain, causing seizures, vision problems, and learning disabilities
- A curve in the spine, known as scoliosis; severe curves may cause pain and breathing difficulties.
Children with severe spina bifida are treated with physiotherapists, occupational therapists, and often surgery. They may need a brace or wheelchair to aid their mobility. Other issues may raise as the child grows and other treatments and surgeries are needed.
Baby Roger’s Diagnosis
After the diagnosis, doctors suggested abortion as a possible option to Lexi Royer, but she and husband refused and went on a mission to find other treatment options for their unborn child. Texas Children’s Hospital admitted them and offered an experimental fetal surgery. The couple moved from San Diego to Houston for four months during the treatment.
In September, after six months of pregnancy, they performed the surgery. Dr. Michael Belfort, a surgeon at Baylor in Houston, Texas explains they postpone it until the baby could survive outside the womb in case anything goes wrong.
The surgeons made tiny incisions in the mother’s uterus and repaired the gap in the fetus’s spine through a camera monitor. The amniotic fluids in the womb can erode the nerve tissue protruding from the spine. Closing this spinal gap before birth is crucial to lessen the effects of spina bifida as much as possible.
Baby Royer was born screaming two days before his due date. His parents and doctors watched with exhilaration as he moved his legs and feet. When he was placed on his belly, he pulled a knee under himself and pushed forward, as if he was trying to crawl away from the nurses swaddling him.
His parents and doctors have great hopes he will be able to walk normally in the future.
“It was so worth it,” says Lexi Royer. “I’d do it again in a heartbeat. That’s for sure.”
The Successful Experimental Treatment
Although the Royer’s surgeons used a new technique, doctors have conducted in-utero surgery for spina bifida and other defects for years.
In 2003, the National Institute of Health’s Management of Myelomeningocele Study (MOMS) discovered closing the spinal opening in utero increases the chances of the baby walking independently and prevents fluid buildup in the brain.
In 2014, British doctors performed the first surgery on an unborn baby girl with spina bifida with successful results. Two years later, 14-month-old Frankie successfully learned how to walk.
Baby Royer initially had defects that were more severe than usual. After birth, his back barely showed any signs of it.
“We faced a lot of doom and gloom in San Diego, but we had a lot of hope and optimism,” says the father, Joshuwa Royer. “We want to get awareness out to other people that there are options. It’s definitely worth doing the research.”