On Sept. 27, as a six-month-old fetus, he underwent experimental surgery while still in his mother’s womb to treat a severe form of spina bifida, in which the tissue that should enclose and protect the spinal column does not form properly.
The condition leaves the spine open with nerves exposed, and they sustain damage that can leave a child incontinent and unable to walk. The opening leaks spinal fluid, and the base of the brain can sink into the spinal column and be harmed by pressure.
Research has shown that for carefully selected fetuses, surgery before birth rather than after gives the child better odds of being able to walk independently and of avoiding the need for an implanted shunt to prevent fluid buildup in the brain.
Usually, the prenatal surgery requires cutting open the uterus. But after carefully studying the options and consulting various specialists, Lexi and Joshuwa Royer chose an experimental approach. In that procedure, developed at Texas Children’s Hospital by Dr. Michael Belfort, the obstetrician and gynecologist-in-chief, and Dr. William Whitehead, a pediatric neurosurgeon, doctors make just tiny slits in the uterus to insert a camera and miniature instruments. The camera sends images to a monitor that the surgeons watch so they can see what they are doing.
Credit Jo Belfort
Though more data is needed, the newer approach seems to have two major advantages, which were important to the Royers. It appears less likely to lead to a premature birth, which can cause many complications for the newborn. And it gives the mother a chance to have a vaginal delivery. Women who have the usual fetal surgery have to give birth by cesarean section, which poses risks for subsequent pregnancies.
For the Royers, the procedure, described in an Oct. 23 article in The New York Times, lived up to its promises. Mrs. Royer’s pregnancy lasted the full nine months, and she had a happy, uncomplicated vaginal birth with her husband by her side. Dr. Belfort delivered their son.
The infant’s back, which previously had the biggest defect the surgeons had ever repaired, now showed barely a hint of it. But incisions on his sides, made during the fetal surgery to loosen enough tissue to cover the hole in his back, had not closed. Those cuts usually heal on their own after birth, but one had a sizable lump of tissue bulging out and needed suturing.
Three hours after he was born, Baby Royer was on an operating table with three plastic surgeons stitching up his sides. The job took less than an hour.
Dr. Larry Hollier, the surgeon-in-chief and chief of plastic surgery at Texas Children’s Hospital, marveled at how good Baby Royer’s back looked.
“I’ve never seen a such a big defect successfully repaired, with the child moving his feet at birth. It’s unbelievable. If this is the cost of getting that closed — just having to do a little skin operation — it’s fantastic.”
Later that day, Baby Royer sucked down a bottle of milk and had no trouble latching on to his mother’s breast.
A battery of tests lay ahead. Fetal surgery does not cure spina bifida, doctors warn. It only lessens the disability. So, for Baby Royer, time will tell.
The Royers, who moved from San Diego to Houston for four months to be treated there, said they had made the right choice, though it had not been an easy decision.
“We faced a lot of doom and gloom in San Diego, but we had a lot of hope and optimism,” Mr. Royer said. “We want to get awareness out to other people that there are options. It’s definitely worth doing the research.”
“It was so worth it,” Mrs. Royer said, with tears in her eyes. “I’d do it again in a heartbeat. That’s for sure.”