“Feisty” Baby Royer born less than four months after experimental prenatal spina bifida surgery

Parents rejected abortion

By Dave Andrusko

Last October we wrote a post based on two stories written by New York Times Health and Medicine reporter Denise Grady which we headlined, “Parents reject abortion, mom undergoes experimental surgery to treat her son who suffers from severe spina bifida.” It was one of my favorite stories for all of 2017.

As the headline suggests, when Lexi and Joshuwa Royer learned their six-month-old unborn baby had a severe form of spina bifida, “termination” was suggested. As Grady wrote, “The defect was big and severe, and the brain stem was being pulled down into the spinal column.”

But the Royers were having none of that and after careful consideration chose a newer experimental surgery which took place September 27 at Texas Children’s Hospital in Houston. Unlike the standard prenatal surgery for spina bifida where surgeons cut open the woman’s abdomen and uterus to reach the baby, with the newer approach, the surgeon, Dr. Michael Belfort, opened Mrs. Royer’s lower abdomen, but not her uterus.

[H]e eased the uterus out of her body and inserted the fetoscope, and then, through another slit, surgical tools. The doctors drained out the amniotic fluid and pumped in carbon dioxide to keep the uterus expanded, giving them room to work and allowing them to see better and cauterize when needed.

Grady’s updated story—“After Surgery in the Womb, a Baby Kicks Up Hope,” begins with a wonderful lead

HOUSTON — For a small person who had surgery before he was even born, and who’d just spent an hour and a half squeezing through a tight space that clamped down on his head every few minutes, Baby Boy Royer was showing a feisty spirit.

He arrived pink and screaming on Friday at 5:35 a.m., two days before his official due date, weighing 8 pounds 8 ounces, and almost 20 inches long.

Within moments of his birth at Texas Children’s Hospital, he did what his parents and doctors had eagerly hoped to see: He moved his legs and feet, a sign that the operation may have prevented damage to the spinal nerves needed for walking.

But there was an additional problem for Baby Royer.

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.

Just three hours after the baby’s birth, “three plastic surgeons [were] 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.”

Grady reminds us that surgery is not a cure for spina bifida. The goal is to minimize whatever ensuing disabilities. She concludes

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.”