“He was kicking his legs, moving all the way down to his feet,” Mrs. Royer said. “He has function down to what they call the ‘gas pedal’ movement. His ankle is flexing and pointing, a really good sign for being able to walk.”
Even if he could not walk, she said, needing a wheelchair does not ruin a person’s quality of life.
More important, the doctors thought surgery had a good chance of eliminating the need for a lifelong implanted shunt to drain excess fluid from his brain. The devices often need replacing, which requires more surgery, and they can lead to infection.
Mrs. Royer acknowledged there was no guarantee that her son would be free of a shunt. But she said she and her husband had “happiness and peace” after deciding to go for the surgery.
On Sept. 26, the day before the operation, Mr. and Mrs. Royer and her parents met with the medical team at Texas Children’s.
With more than a dozen doctors and nurses in the conference room, it was standing room only. All would be involved in the operation.
Dr. Belfort reviewed the test results, telling the group that the fetus had a “significant lesion” involving much of his lower back. But he added, “He’s able to do the gas pedal. That’s a great thing. There’s a lot of function to save.”
Addressing Mrs. Royer, he said: “This is experimental surgery, with no guarantee. You are the person who will take the risk for another person. There is no mandate for you to do this. Nobody will think less of you if change your mind, and you can change your mind until the last minute, until you go to sleep.”
Early the next morning, with Mrs. Royer under general anesthesia, the surgery began in an overheated operating room ideal for the fetus but sweltering for doctors and nurses in caps, gloves and surgical gowns.
During the standard prenatal surgery for spina bifida, surgeons cut open the woman’s abdomen and uterus to reach the fetus. But the newer, experimental approach is different.
Dr. Belfort opened Mrs. Royer’s lower abdomen, but not her uterus. Instead, he 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.
They gave the fetus an anesthetic injection and then, guided by images on the video screens, began to operate on him, tugging skin and membranes over the naked spinal cord and sewing them tightly shut with five stitches to seal out amniotic fluid.
Because the defect was so large, they made “relaxing incisions” along his sides, to loosen the skin so they could pull it across his back. The cuts would heal, though they would leave scars.
Every few minutes, a pediatric cardiologist called out the fetal heart rate, which held steady at a normal rate of about 150 beats a minute. When the surgery was finished, the doctors replaced the amniotic fluid with saline.
The surgery took three hours. The standard, open operation is faster and easier, but Dr. Belfort and Dr. Whitehead think their method will prove safer for both the mother and the fetus.
With the open procedure, the cut into the uterus increases the risk of early labor and premature birth, which puts the fetus at risk for a host of complications.
The incision also raises the risk of uterine rupture during labor, and requires that the mother give birth by cesarean section, which is generally riskier for women than a vaginal birth.
The scarring on the uterus from the two operations makes it likely that she will need cesareans for future births, and also increases the risk of placental problems that can be life-threatening. The small slits for the fetoscopes are thought to reduce these risks.
To develop their fetoscopic procedure, Dr. Belfort and Dr. Whitehead operated on sheep and spent several hundred hours over the course of two years practicing on a simulator that they had created. It consisted of a rubber kickball, about the size of a basketball — like a uterus at 24 weeks of pregnancy — with a doll inside, wrapped in chicken skin that they cut to mimic the defect in spina bifida.
They would insert fetoscopes into the ball and, eyes on the monitor, work together to sew up the chicken skin. They completed more than 30 simulated operations, including two sessions in an operating room, with a full surgical team assembled. They still use the simulator at least twice a month to keep up their skills, Dr. Belfort said.
They operated on their first patient in July 2014. In August, in the journal Obstetrics and Gynecology, they reported on their first 28 cases. So far, the results have been good, though the numbers are small.
No fetuses have died, few have needed shunts, and some of the mothers have been able to have vaginal deliveries. Their pregnancies appear to last longer, coming closer to full-term than with the open procedure. More research is needed, but other medical centers have begun adopting the technique. Surgeons at Johns Hopkins have used it to treat five patients, and Dr. Belfort is helping to train colleagues at Stanford.
Doctors who practice the open procedure are critical, and warn that the carbon dioxide pumped into the uterus may harm the fetus and cause neurological problems. Dr. Belfort said there has been no evidence of harm. But time will tell.
Mrs. Royer, who will stay in an apartment in Houston for the rest of her pregnancy, had a painful recovery from the surgery. But she has no regrets.
“It’s not done by any means, but I definitely feel it’s the right thing for us,” she said. “Seeing the ultrasound and how good he’s doing, moving his ankles and feet, it’s such a happy moment.
“I can’t imagine going on further in the pregnancy not knowing every day what damage is being done and if he’s getting worse. It’s such a relief to move forward.”
Her due date is Jan. 14.
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