texas children’s fetal center® pioneers in the fetoscopic repair of spina bifida

connexions6 special editorial submitted by friend steward partners at texas children's fetal center® Successful surgery paves way for remarkable outcome Ashley and Jason Andruss were thrilled to find out they were expecting just a few months into their marriage. They excitedly began planning the nursery and thinking about what the future held for their child. Four months into the pregnancy, however, their doctor called with distressing news. An ultrasound showed signs that their child may have spina bifida, an opening in the middle of the baby’s spinal cord that was likely to limit movement from the knees down, possibly from the waist down, and may cause hydrocephalus, developmental delays, kidney and bowel issues for life. “It’s emotional whiplash,” Ashley said. “All of the hope and excitement turns into anxiety and trying to figure out how to give your child the best options in life.” Residents of Singleton, Texas, Ashley and Jason extensively researched fetal centers, procedures and outcomes before deciding what to do next. They learned Texas Children’s Fetal Center developed a new fetoscopic procedure for spina bifida that could reduce the chances of hydrocephalus, preserve the motor functions a child currently had, and reduce the invasiveness and risks associated with cutting the uterus open midterm. People were traveling across the country, even internationally, to Texas Children’s to undergo or learn how to perform the procedure.

Although it was only 90 minutes from home, having this surgery at Texas Children’s would require a big commitment. If Ashley qualified – based on factors such as the position and condition of the baby, the lesion and the placenta – she would have to relocate to Houston for the remaining months of her pregnancy and accept certain risks that go along with any fetal intervention. “We prayed about it, weighed all the risks and benefits, and had certain questions we needed answered, but my husband and I wanted to do whatever we could to give our child the best life possible,” Ashley said. “We didn’t want to have any regrets or wonder what their life might’ve been had we just done the surgery.’” On Feb. 13, 25 weeks and 3 days into Ashley’s pregnancy, Ashley became the 23rd person in the U.S. to undergo the experimental fetoscopic two-port procedure. The surgery proceeded without complications, and Ashley was released after only one week in the hospital. She spent the next 3 ½ months in an apartment in Houston, on bed rest except during doctor’s appointments. Family members rotated staying with her during the week so that Jason could continue to work. The Fetal Center team carefully monitored mother and baby’s progress and kept the family well informed as the weeks ticked by. “Having someone that can fully explain all the unknown variables to you, and who you know will be there to get your family through it, no matter what, it puts you much more at ease about what you are doing.” One thing the Andrusses especially appreciated was the team’s ability to keep the baby’s gender a secret. “With everything going on with this pregnancy, waiting until the day of delivery to find out if we were having a daughter or a son felt like the one thing we could control,” Ashley said. “Everyone knew the sex and there were countless opportunities to let it slip, but it never did.” As Ashley neared the 39th week of her pregnancy, her water broke in the night. The next day, she gave birth to a healthy 7 lb. 15 oz. baby girl named Olivia. After spending 8 days in the NICU for monitoring, the Andrusses were able to go home. All along, there were signs to suggest that the surgery was successful. Six weeks after the surgery, a fetal MRI showed relieved pressure in her brain. After birth, Olivia had strength in her lower limbs and full sensation in her toes. But it wasn’t until she was 2 months old – suddenly more active and alert, kicking and pushing up – that her parents breathed a huge sigh of relief. They were overjoyed to celebrate another big milestone when Olivia started walking at 18 months, just a month or two outside of the normal window for babies to walk. Today, Olivia is a happy and healthy 2 ½ year old who “talks up a storm, loves to climb and is as smart as a whip.” “After that first call from my doctor, I never imagined I’d have the 2 ½ year old that I have,” Ashley said. “We still face obstacles that all spina bifida patients face, but with each day that passes, we are hopeful that we’ll continue to beat the odds. And that Olivia will continue to be a ray of hope for what can be.” About fetoscopic repair of spina bifida surgery Developed by Dr. Michael Belfort, Ob/Gyn-in-Chief at Texas Children’s Pavilion for Women, and Dr. William Whitehead, Pediatric Neurosurgeon at Texas Children’s Hospital, fetoscopic repair surgery for spina bifida is typically performed between 19 and 26 weeks of gestation. Patients must undergo a comprehensive evaluation of their pregnancy and meet (left to right) Andruss family with Dr. Belfort; Olivia at 21/2 years old

specific criteria to qualify for the surgery. Once a patient has visited the center for evaluation and is qualified for the procedure, they meet with fetal specialists to discuss the risks and benefits of the procedure and help the patient decide the best treatment approach for them. If they opt for the fetoscopic procedure, the surgery is scheduled. During the procedure, the mother is given anesthesia and her uterus is exposed and lifted to allow two 4-millimeter minimal incisions to be made in the uterus and fetoscopic ports inserted. Amniotic fluid is then removed and replaced with carbon dioxide gas to inflate the uterus and improve visualization. A small scope with a camera on the end and tiny surgical instruments are then inserted into the uterus through the ports. Guided by ultrasound, the surgeon closes the defect, protecting the fetal spinal column and nerves from infection and injury for the remainder of the pregnancy. The uterus is returned to the abdomen, the abdominal incision is closed and gestation resumes. Following the procedure, the mother will stay in the hospital for 5 to 10 days. Mother and baby will be closely monitored for the remainder of the pregnancy, so it important that they are within a few minutes’ drive from Texas Children’s at all times. Although Texas Children’s Fetal Center surgeons have significant experience in both the open repair method and the fetoscopic method, the positive outcomes of the fetoscopic method has led to the majority of recent spina bifida patients opting for the less invasive surgery. As of the beginning of 2020, Texas Children’s has completed over 70 such repairs. “The fetoscopic repair offers the same improved outcomes for the infant after birth as open fetal surgery, with significant additional benefits that come with using a less invasive approach,” Belfort said. Benefits such as: • An opportunity for vaginal delivery in current and future pregnancies. The openhysterotomy approach requires a cesarean delivery. More than 50 percent of our fetoscopic patients deliver vaginally. • Reduced risk of uterine rupture. If vaginal delivery occurs, reduced risk of complications related to uterine scar thinning or abnormally invasive placenta (percreta, accreta, increta) for any subsequent pregnancies. • Longer gestation, with an average age at delivery for fetoscopic patients of 37-38 weeks. In the latest study results published by Texas Children’s Fetal Center, at 12 months old, only 35 percent of patients undergoing the fetoscopic procedure had ever required a shunt. And by 30 months, 90 percent of fetoscopic patients were walking, either independently or with orthotics or devices. For current volumes and outcomes information please visit women.texaschildrens.org/ fetaloutcomes. About Texas Children’s Fetal Center Since 2001, Texas Children’s Fetal Center has been at the forefront of developing new fetal procedures to treat devastating conditions like spina bifida, lower urinary tract obstruction, congenital diaphragmatic hernia, congenital heart defects, twin-twin transfusion syndrome, and more. It is one of few centers in the United States to offer the full spectrum of fetal therapies to patients. Known for pioneering advanced treatments including EXIT-to-resection procedures and fetoscopic versions of standard open fetal surgeries, Texas Children’s Fetal Center offers dedicated support for every family. Expert treatment is paired with a clinical coordinator highly trained in meeting the needs and answering the questions of patients with fetal anomalies.

It’s with great pride and privilege that Texas Children’s Fetal Center cares for patients like the Andruss family, delivering the highest quality of care across the full spectrum of needs, for the best possible outcomes. To learn more about Texas Children’s Fetal Center, please visit women.texaschildrens.org/fetal or call 832-822-BABY (2229) with any questions you may have.