“The other day he sat up with his hands propped on his legs as we were tossing a ball back and forth with my dad, and Dylan lifted his arms up over his head at one point,” said Courtney. “It was just for a couple of seconds, but in that short, sweet moment, Dylan was sitting unsupported – it was amazing to see!”
For the Rays, Dylan’s spina bifida has taught them many key lessons: to take things day by day, avoid worrying about things to come, enjoy every moment and celebrate Dylan’s small but mighty victories.
“Dylan has come a long way in his journey,” said Courtney. “He amazes us with what he can do.”
The Ray’s Journey With Spina Bifida
When Courtney was 20 weeks pregnant with baby Dylan, she went in for an anatomy scan at her OB-GYN’s office in Shreveport, Louisiana. At that appointment, her OB-GYN noticed something was not quite right.
“The ultrasound showed the ventricles in my baby’s brain were enlarged,” said Courtney. “Concerned he might have hydrocephalus, my OB-GYN sent me to a maternal-fetal medicine specialist in town.”
A few days later, Courtney met with her family friend and MFM physician, Dr. Christian Briery. After performing tests including an ultrasound and amniocentesis, the Rays learned Dylan had spina bifida.
Dylan had myelomeningocele, a type of spina bifida birth defect that occurs when an area of an unborn baby’s spine does not form properly inside the womb, exposing a section of the spinal cord and spinal nerves. A membrane-covered sac containing the baby’s spinal cord and surrounding nerves protrudes through the opening. The higher the sac is on the spine, the more loss of function can occur after birth. The condition can cause severe and lifelong disabilities, such as difficulty walking and going to the bathroom. Another complication associated with spina bifida is hydrocephalus, a buildup of cerebrospinal fluid in the brain.
“I remember sitting in the exam room completely speechless,” said Courtney. “Dr. Briery told me spina bifida can happen during the first month of a baby’s development before most women know they are pregnant. Although difficult to hear, he reassured me there was nothing I had done wrong.”
“Dr. Briery mentioned there was a children’s hospital in Houston that performs fetal surgery to repair spina bifida,” said Courtney.
Fetal surgery is when a team of surgeons repair a congenital birth defect while the baby is in the mother’s womb to help improve the long-term outcomes of the child.“ My husband and I thought the fetal surgery route would be a good option for us to consider so that same day, my MFM referred us to The Fetal Center at Children’s Memorial Hermann Hospital.”
Dr. Briery suggested Courtney go to The Fetal Center because of its excellent reputation for treating patients with spina bifida. Dr. Briery knew about the current UTHealth Houston spina bifida clinical trial taking place at The Fetal Center and thought Dylan could benefit from this innovative fetal intervention treatment that uses a human umbilical cord patch.
Meeting the Care Team
In March 2021, Courtney and Andrew arrived in the Texas Medical Center to meet with the spina bifida surgery team affiliated with The Fetal Center at Children’s Memorial Hermann Hospital, which included specialists from McGovern Medical School at UTHealth Houston.
The Fetal Center is a national referral center and an international leader in fetal diagnosis, fetal intervention and comprehensive fetal care for infants with congenital and genetic abnormalities. In collaboration with pediatric subspecialists at McGovern Medical School, this multidisciplinary team offers patients a complete range of prenatal testing and fetal interventions with a coordinated program for mother and child before, during and after birth.
Courtney and Andrew spent three days at The Fetal Center, where they met with members of the affiliated spina bifida team to discuss treatment options. Additionally, Courtney and her unborn son underwent tests to determine whether they would be ideal candidates for fetoscopic surgery and a clinical trial only taking place through McGovern Medical School, with Children’s Memorial Hermann Hospital serving as the study site.
“The first day, they did a fetal MRI to see where Dylan’s lesion was on his spine and to identify the severity of his hydrocephalus,” said Courtney. “We had several tests done including an ultrasound to determine if Dylan and I qualified for fetal surgery. I remember having all-day appointments with maternal fetal doctors, pediatric surgeons, a neurosurgeon, an anesthesiologist and a genetic counselor. They checked off certain boxes to see if I qualified not just for fetal surgery, but for the umbilical cord patch study underway. Sure enough, my son and I met all the criteria for the trial. While I was glad we met the criteria, I was a little anxious about everything. Once we met with the doctors who had done this procedure before and had seen results, I was more comfortable moving forward with it.”
A Ray of Hope
Courtney is one of more than 30 women to participate in the one-of-a-kind fetoscopic spina bifida study led by Ramesha Papanna, MD, MPH, a professor of maternal-fetal medicine at McGovern Medical School and co-director of the Fetal Center at Children’s Memorial Hermann Hospital. Dr. Papanna is internationally recognized for his research on improving outcomes after fetal intervention and investigating methods for the prevention of pre-term deliveries.
The single-center clinical study involved a minimally invasive fetoscopic surgery where a patch is placed over the spinal defect to reduce the risk of tissue damage at the repair site. The study is the first to use a meningeal patch, which is made of donated cryopreserved human umbilical cord known to have anti-inflammatory, anti-scarring and regenerative properties.
“The current technique uses local tissue to cover the spinal cord defect,” said Dr. Papanna. “This can create inflammation and scar tissue at the repair site, leading to spinal cord tethering. As the spinal cord attaches to the scar tissue, it causes the cord to stretch, resulting in pain and potential damage to the spinal nerves as the child grows. The tethering can also impact the mobility of the spine, requiring the child to undergo another surgery to release the tethered cord. However, the umbilical cord patch that we are investigating will hopefully reduce this complication, so spina bifida patients do not have to undergo multiple surgeries as they get older. In our study, our objective is for the umbilical cord patch to reduce inflammation and scarring significantly and help the spinal cord to continue to grow normally.”
The Rays were ready to do whatever was necessary to give their son the best outcome.
“After discussing everything with the spina bifida team, we knew this was the best option for Dylan,” said Courtney and Andrew. “If this surgery meant preserving whatever leg movement and bowel and bladder function he had while in my womb, we supported it. We had faith and confidence in our team.”
When Courtney was 25 weeks and 4 days pregnant, Dylan underwent an operation to repair his spinal cord defect in utero and improve his chances of being mobile.
“On the day of surgery, our spina bifida team made a vertical incision from the top of Courtney’s belly button to midway down the pelvic bone to expose the abdomen for the fetoscopic repair. Guided by ultrasound, we made three small holes in Courtney’s uterus so we could insert surgical instruments and a camera to close the spinal cord defect on Dylan. Once the spinal cord was exposed, our team carefully sewed the umbilical cord patch over the defect on Dylan’s spine. After the fetal surgery, Courtney was given medication to help prevent or delay pre-term contractions,” said Dr. Papanna.
The fetal surgical team affiliated with the hospital takes a multidisciplinary approach that includes maternal-fetal specialists, pediatric neurosurgeons, pediatric surgeons and anesthesiologists – all of whom serve as faculty members at McGovern Medical School. The surgical team’s maternal-fetal medicine specialists, who serve as faculty in the Division of Fetal Intervention in the Department of Obstetrics, Gynecology and Reproductive Sciences, include Dr. Papanna; Eric P. Bergh, MD, assistant professor of maternal-fetal medicine; and Anthony Johnson, DO, professor of maternal-fetal medicine and co-director of The Fetal Center. The team’s pediatric neurosurgeons, who serve as faculty in the Division of Pediatric Neurosurgery in the Department of Pediatric Surgery, include Stephen Fletcher, DO, professor of pediatric neurosurgery; and Brandon Miller, MD, PhD, assistant professor of pediatric neurosurgery. The team’s pediatric surgeons, who serve as faculty in the Division of Pediatric General and Thoracic Surgery in the Department of Pediatric Surgery, include Mary Austin, MD, associate professor of pediatric surgery; and KuoJen Tsao, MD, professor and The Children’s Fund, Inc. Distinguished Professor in Pediatric Surgery and co-director of The Fetal Center.
“I recovered in the hospital for three days and was on bedrest for the remainder of my pregnancy,” said Courtney. “My husband and I stayed at my aunt and uncle’s house in Houston for a few weeks. I saw Dr. Bergh and Dr. Papanna every week for ultrasounds to ensure things were improving. The appointments went well. When I was 27 weeks and 6 days pregnant, I was cleared to return home to Shreveport where I had weekly MFM visits with Dr. Briery.”
Dylan Is Born
“The hospital was about to send me home so Andrew and I could pack our bags and make the 4-hour drive to Houston on our own,” said Courtney. “But then I was leaking more fluid. Despite the negative test, the doctors decided to have me transported directly to Children’s Memorial Hermann Hospital via ambulance. I was in the hospital from May 7 to May 21, and I was monitored daily and saw Dr. Bergh every day. My fluid levels on May 21 were high enough that my care team felt comfortable releasing me to my aunt and uncle’s house. On May 24, when I went in for my appointment with Dr. Bergh, my fluid levels dropped again. I was readmitted to the hospital with plans to stay there until our son was born.”
As a Level IV Maternal Facility, which denotes the highest level of care as designated by the Texas Department of State Health Services, The Women’s Center at Children’s Memorial Hermann Hospital provides comprehensive care for both mom and baby. Additionally, the neonatal intensive care unit (NICU) at Children’s Memorial Hermann Hospital with 118 beds is also classified as a Level IV NICU by the Texas Department of State Health Services – the highest level of care available for premature and critically ill newborns. Our affiliated team from McGovern Medical School provides care for pregnant and postpartum patients, from those with low-risk conditions to ones with the most complex issues, as well as high-quality care for their babies.
At 33 weeks and 5 days, Dylan was born at Children’s Memorial Hermann Hospital via C-section with Dr. Bergh on May 26, 2021, weighing in at 5 pounds and 9 ounces.
“It was exciting to finally see our baby for the first time,” said Courtney. “Dylan was moving his arms. He had some movement in his legs but it was sporadic. At that moment – no matter his diagnosis – this was our baby and we loved him no matter what. Seeing our little trooper multiplied that feeling times 100.”
Dylan spent 23 days in the NICU at Children’s Memorial Hermann Hospital, where his doctors and nurses monitored him closely. Dylan was positioned on his stomach to give the repair site time to heal. While in the NICU, Dylan also had a shunt placement to treat his hydrocephalus. The shunt diverts excess cerebrospinal fluid away from the brain, where it can be absorbed by the body.
“Dr. Bergh, Dr. Papanna and Dr. Fletcher would check in to see how Dylan was doing,” said Courtney. “We had wonderful nurses in the NICU as well, who were very helpful and comforting, and took great care of our baby. They all made what was a tough situation the best it could be all things considered.”
Small but Mighty Victories
Despite all their son has been through, Courtney and Andrew are amazed by everything Dylan has accomplished in the last year. He is goal-oriented and is achieving milestones every step of the way.
“He is army crawling all over the place,” said Courtney. “He doesn’t have the leg movement to stand up or crawl yet, but those are all things we are working on in physical therapy. He has a stander to help him stand up and weight-bear because weight-bearing is such an important part of his development, not just for the muscles and bones, but even for his organ development. From his entire care team at Children’s Memorial Hermann Hospital to his doctors and therapists in Shreveport, everyone is part of Dylan’s story, and they are an important part of his success. They love Dylan and we know how much they are invested in his care.”
Dylan’s follow-up care is managed through the UT Physicians Comprehensive Spina Bifida Program, which is home to a multidisciplinary team composed of seven specialties that provide compassionate, coordinated care. Through the program, the team works with The Fetal Center to provide a seamless transition of care from fetal diagnosis and intervention to postnatal care in Children’s Memorial Hermann Hospital, and finally, to the outpatient clinic setting at UT Physicians. The medical director of the program is another one of Dylan’s physicians, Jason Au, MD, who is assistant professor in the Division of Pediatric Urology in the Department of Pediatric Surgery at McGovern Medical School and is affiliated with Children’s Memorial Hermann Hospital.
As part of the spina bifida program, Dylan is also seen by Lindsay Crawford, MD, and Surya Mundluru, MD, of the pediatric orthopedic surgery team to keep a close eye on his spine, hip, leg and foot development since most kids with spina bifida can have orthopedic issues down the road such as hip dysplasia, scoliosis and lower extremity deformity. Dr. Crawford and Dr. Mundluru are both assistant professors of orthopedic surgery at McGovern Medical School and pediatric orthopedic surgeons affiliated with Children’s Memorial Hermann.
“It’s nice to see all the doctors involved in his care,” said Courtney. “There are still a lot of unknowns for Dylan, and that’s one of the toughest things about spina bifida. We are grateful to have wonderful doctors in the spina bifida clinic who are monitoring him regularly and keeping a close eye on him. If Dylan needs intervention down the road, for whatever reason, we have an amazing team for our son.”
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Located within the Texas Medical Center, The Fetal Center is affiliated with McGovern Medical School at UTHealth Houston, UT Physicians and Children’s Memorial Hermann Hospital.