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TheOS ANGELES – Gilda Giron was 13 weeks pregnant and was just starting to worry. Something was wrong with his ultrasound image. At 16 weeks, Gilda and her husband Arnuf received the devastating news that their baby had myelenomenocele, the most severe form of spina bifida. His little spine was open, exposed and there was a leaking liquid. The congenital malformation meant that she had nerve damage that could cause paralysis and an inability to control her bladder or intestines. She was coping with her life with a shunt implanted in her brain.
Many parents who are diagnosed with spina bifida in early pregnancy choose to end it. But Arnuf and Gilda, who work with people with disabilities, were determined to keep their baby. They turned to the following option: a surgery in the uterus to repair the defect.
Fetal spina bifida surgery is complex. Because it requires an incision of the mother's abdomen and uterus, such as a caesarean section, it requires a long recovery period, which would have been difficult for Gilda, who has two other young children. "Open surgery" involves a risk of premature birth and complications at birth. It also means having a caesarean, for this birth and for all future, because of the risk of uterine rupture.
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During their extensive research, the couple discovered that a few hospitals, including Texas Children's and Johns Hopkins, offered a new, less invasive procedure that opened the mother's abdomen but required only small incisions in the uterus; delicate surgery on the fetus was performed with specialized instruments placed through the holes. But Girons' insurance would only pay for the conventional procedure, which involved going to San Francisco from their home in the Whittier suburb of Los Angeles.
Gilda, 35, was frantic. The operation being ideally performed about 25 weeks after the beginning of pregnancy, the Girons only had a few weeks to decide what to do and determine if they had to move their family from the state and spend their savings to pay for the new surgery. . Then one day, unexpectedly, their obstetrician proposed an alternative. A pilot study on a new type of fetal spina bifida surgery – a much easier operation for Gilda – has just been launched and the procedure will be covered by their insurance. Better still, the study was taking place in the city, at the University of Southern California and Los Angeles Children's Hospital.
Gilda and Arnuf, 34, immediately went to meet the chief surgeon, Dr. Ramen Chmait, a veteran fetal surgeon who heads the Los Angeles Fetal Surgery Program.
"I attended the meeting saying," I want to do that, I just do not want to be the first, "Gilda said." He said, "Well, you're the first one."
Gilda underwent the experimental operation last February. She and the surgeons talked about it for the first time last week with STAT – a week after the birth of their baby, Abigail.
FFor decades or decades, the standard treatment for babies with spina bifida was to operate them after birth to cover the opening of their spine. But the uterus can suffer a lot of damage: there can be too much or too little cerebrospinal fluid around the brain, the brain can move and nerves exposed can be damaged. Most babies with spina bifida who are operated upon after birth need lifelong shunts to control the swelling of the brain and have difficulty walking and controlling their bladder and intestines. It was not what Gilda and Arnuf wanted for their little girl.
Doctors have long thought that they could do better. In 2002, three US hospitals launched a randomized clinical trial, called the MOMS trial, to determine whether babies with spina bifida would be better off if they had surgery in the uterus. They started to treat 200 fetuses but stopped the trial earlier because the results were so conclusive that fetal surgery was better: babies operated in utero were less likely to require shunts and were more likely to walk without crutches or appliances orthopedic.
After the publication of the milestones in 2011, fetal spina bifida surgery has become the standard of care. This procedure is now available in a dozen medical centers in the United States, but it increases both the maternal risk and the risk of preterm birth. As a result, some parents still choose to wait until after birth to operate.
In 2014, surgeons at the Texas Children's Hospital began spina bifida repair surgery, in which the mother's abdomen is open, but the uterus remains intact. The uterus is extracted from the abdomen and swollen with carbon dioxide. Endoscopic surgical tools called trocars and a tiny camera are then inserted into the uterus through small holes.
After practicing about fifty of these "fetoscopic" procedures, the surgeon behind this approach, Dr. Michael Belfort, said that in his opinion, this surgery equates to open surgery in terms of 39, fetal support, although longer-term data are needed. Obstetric benefits are "huge". This nonetheless means that the mother has to bear a major surgical incision in the abdomen. Chmait wanted to go further. He did not want to open the abdomen at all.
Chmait practiced thousands of fetal surgeries. It treats fetuses with broken heart valves, lung tumors, clogged bladders and teratomas that grow on the coccyx. He uses lasers to carefully unravel the abnormal blood vessels that germinate when identical twins share a placenta. Even the most delicate of these procedures require only a minimally invasive endoscopic procedure. It has been boring for a long time that spina bifida repair is the only fetal surgery for which the abdomen must be opened. "We always thought that this should be the next step," he said.
About a decade ago, Chmait heard about Dr. Denise Lapa, a pioneering Brazilian scientist and surgeon, who had spent years developing a way to repair spina bifida in the womb without making big incisions in the womb. Uterus or abdomen. (Brazil, where abortion is illegal and more widespread malnutrition, has a high rate of spina bifida.) Lapa performed nearly 100 surgeries and, according to Chmait, contributed to the first operation in the United States, At New York. Presbyterian Hospital last year; this has not been announced.
For years, Chmait traveled to Brazil to observe and learn the technique in which the uterus and the fetus stay inside the body during the procedure. He practiced on an installation invented at Texas Children's: a doll covered with chicken skin and inserted in a rubber ball. After years of obtaining approval from the Food and Drug Administration and the four institutions involved in the study – LA Children's Hospital, USC's Keck Medicine, Huntington Hospital in Pasadena and Wellington Regional Medical Center in Florida – Chmait was ready to proceed.
There were still uncertainties. The baby's spinal cord injury had to be imaged to make sure she would qualify for surgery. The ultrasound showed that she did not have enough fluid to dampen her brain. "These five weeks seemed like a long time," Gilda said.
On February 19, the operation was carried out at the Huntington Hospital. Lapa went by plane to observe, support and do the cheerleader, an addition to the operating room that delighted the nervous mother.
It's a long surgery: it takes an hour to insert the trocars, remove the amniotic fluid and swell the uterus, said Chmait. The procedure went well. With the help of pediatric neurosurgeon, Dr. Jason Chu of the Los Angeles Children's Hospital, Chmait dissected the spinal cord and exposed nerves. While operating, he could see the cerebrospinal fluid draining in large drops. Chmait and Chu gently put the spinal cord back in place and covered the opening in the baby's back with a collagen patch. Chmait then sewed the baby's skin on the patch and replaced the amniotic fluid that had been removed.
During the six-hour procedure, Arnuf waited anxiously outside. As soon as the operation team came out, he realized that everything had gone well. "It was like a 1980s movie where the basketball team won the championship," he said. "There were high-fives all around. They did not even have to say a word. "
WAlthough the operation was successful, the Girons remained nervous because premature delivery was still a risk. They celebrated each week that has passed. While expecting to have a vaginal delivery, Gilda was scheduled for a caesarean section at 39 weeks. As the date approached, the baby was both breeched and in the wrong direction, which means that Gilda would need not only a cesarean section but also a vertical cesarean section heavier.
At 37 weeks, however, the baby had moved to a more ideal position. The doctors decided that there was no reason to wait. They induced the work.
Abigail Coraline Giron was born at 16:22 on May 16, without a caesarean section. She weighed 5.5 pounds, with a head covered with dark brown silky hair. The patch on his spine was intact. No cerebrospinal fluid escaped. His hips were in the right position. But his back injury was scary and it was not clear yet if his brain was swollen. "We were a crazy mix of happiness and fear," Gilda said.
"Every birth is a great experience," she added. "But it was really, really moving."
Just hours after her birth, Abigail was taken by ambulance across the street to the Intensive Care Unit for Newborns and Infants at the Los Angeles Children's Hospital. while Gilda was waiting for a painful day before being released to join her.
When he saw Abigail for the first time, Dr. Philippe Friedlich, director of the institute for fetuses and newborns at the hospital, could not believe his eyes. In 24 years at the hospital, Friedlich has treated many babies with spina bifida who undergo corrective surgery after birth. "Most babies stay with us for a while. They undergo surgery, anesthesia, catheters. They are intubated and extubated, as well as in intensive care, "he said. "We did not have to do that with Abigail. It changes my life. "
Will this new surgery soon become the standard treatment for spina bifida? Chmait is certain. The team plans the third operation on Tuesday and plans to complete a total of 10 in the pilot study and then be expanded as part of a larger clinical trial. They will gather preliminary results on mothers and babies over the next two years. Chu, the pediatric neurosurgeon, studied at Texas Children's where he observed their procedure and also performed postnatal repairs for spina bifida. Although this approach is still new, he is optimistic based on what he has seen.
Dr. Nalin Gupta was the surgical lead for the MOMS study at UCSF Benioff Children's Hospital, a pioneer in fetal surgery and where the open procedure is still used. He is encouraged to hear about work in Los Angeles as this could limit the risks for the mother and the fetus. "Any procedure in which maternal risk is low is definitely a valuable asset," he said. But Gupta does not plan to change the procedure before having more data on the fate of babies after minimally invasive surgery. He is not yet convinced that endoscopic surgery allows as much complex anatomical work on the spinal cord and nerves as open surgery.
Growing up, Abigail will help provide these answers. As part of this study, its health and development will be monitored closely for five years. The first indications are very good. There was no swelling of the brain at birth which required the establishment of a shunt. Until now, she does not need a catheter to urinate.
When Dr. Alex Van Speybroeck, who runs the spina bifida program at the Los Angeles Children's Hospital, checked Abigail a week after he was born, he pulled out his blanket and headed straight for the region that worried the most – his feet. He was excited to see her move backwards, as if she were pushing a small accelerator pedal. "She stirs her toes so much and she's ticklish," he says, examining Abigail. "It's awesome."
Van Spaybroek will monitor the wound on his back, which is still healing, and the function of the baby's bladder. Surgical repair of spina bifida can limit the damage caused by the defect, but does not heal any damage that may have occurred early in the development of the fetus. Although Abigail may need a brace, Van Spaybroek is optimistic that she can walk alone.
"Abby will go home without any surgery and go home in about a week," he said. "I have never seen this in my career."
Abigail should return home on Tuesday or Wednesday. She was so healthy that she would probably have been able to leave the hospital in a few days, but she stayed close to two weeks to allow doctors to perform the tests needed for the study. . After all, she is the first.
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