We saved our daughter for our wedding anniversary,” Courtney says as she reflects on the impactful events she and her husband, Robert, have experienced together. They both remember the feeling of pure joy in January 2016 when finding out they were pregnant with their second child – a baby girl – after three years of trying. Their happiness soon gave way to worry, though, when Courtney’s obstetrician said her ultrasound scan results suggested the baby’s stomach was in the wrong place – an indication of congenital diaphragmatic hernia (CDH).
Courtney’s obstetrician, located in her hometown of San Antonio, referred her to a local high-risk pregnancy specialist to perform additional scans and confirm the diagnosis. After the testing, the high-risk pregnancy doctor informed Courtney that her baby was indeed suffering from the suspected condition and that the survival rate for CDH is very low.
CDH is a hole formed in the baby’s diaphragm in utero that causes the intestines and abdominal organs to migrate into the chest cavity, leading to compression and underdevelopment of the lungs. Although the hole in the diaphragm can be surgically corrected after birth, the underdevelopment of the lungs prenatally results in a high fatality rate or long-term complications for a surviving child. While its cause is unknown, CDH affects about 1,000 babies born each year.
“We were overwhelmed. I wanted to know if there was anything we could do to save our baby,” Courtney remembers. The high-risk pregnancy doctor told Courtney about a hospital in Houston taking part in an experimental study on fetal treatment for CDH. That day, Courtney called The Fetal Center at Children’s Memorial Hermann Hospital for an appointment.
Courtney and Robert traveled to Houston the next week to see Anthony Johnson, DO, Co-Director of The Fetal Center and a high-risk pregnancy specialist at McGovern Medical School at UTHealth. Dr. Johnson and the affiliated team at The Fetal Center are participating in an experimental trial to treat babies diagnosed with severe CDH before birth through a minimally invasive procedure called fetoscopic endoluminal tracheal occlusion (FETO). FETO intervention, performed during pregnancy, involves placing a balloon in the unborn baby’s airway, causing a backup of fluid produced by the lungs. As the fluid builds, lung growth and development is promoted.
Outcomes for CDH babies have shown improvement when the FETO intervention procedure is coupled with the traditional treatment for CDH – surgery after birth to close the defect. According to Dr. Johnson, “The survival rate for severe CDH is less than 20 percent without fetal intervention based on international data, so it is important to pursue research and innovative procedures like FETO that can offer families hope through alternative treatment options.”
During her initial visit, Courtney underwent advanced scans and consulted with a number of affiliated specialists to discuss her options. Courtney met with the lead FETO nurse coordinator, Alex Patch, RN, who helped walk her through the evaluation process. “Alex was extraordinary throughout the whole experience,” Courtney says, “I am so grateful for her support during this time when I had so many questions.”
After a follow-up MRI scan showed that Courtney qualified for FETO intervention, Dr. Johnson sat down with Courtney and explained step-by-step the potential risks and outcomes for fetal and postnatal treatment of severe CDH. He made it clear that FETO intervention is not at all a guaranteed fix and stressed the importance of comprehensive care from pregnancy through delivery and after birth. “CDH is a complex disease,” Dr. Johnson says. “No matter where families choose to receive care, babies with severe CDH must be cared for by a hospital that has a multidisciplinary program with a commitment to all stages of care – prenatal, postnatal and long-term follow-up – and a research engine pursuing new avenues for treatment.”
Courtney remembers the impact this meeting had on her. “Other doctors had already told me that my baby was not going to live,” Courtney says. “I wanted someone to tell me they were going to try, and that is what Dr. Johnson and the team at The Fetal Center did for me. They did not sugarcoat anything and told me all of the risks up front, but they were also sympathetic to my situation.”
On July 7, 2016, Courtney underwent FETO intervention, performed by Dr. Johnson and the multidisciplinary team affiliated with The Fetal Center. The procedure went well, and the balloon was successfully inserted into the baby’s trachea. By chance, this was the same day as Courtney and Robert’s four-year wedding anniversary. Courtney remembers, “That was an awesome anniversary. After the procedure to save our baby girl was over, Alex and the other FETO nurses took the time to get Robert and me an extra-special dinner to eat together. We really appreciated that.”
The next step was a follow-up operation in August 2016 to remove the balloon from the baby’s airway. Courtney says, “My baby had her chin pointed down, so the doctors could not gain access to her trachea to get the balloon out.” Courtney had an emergent C-section shortly after, and the affiliated team removed the balloon at delivery.
On August 21, Baby Aryah was born. Weighing only 4 pounds, 11 ounces, she went straight to the Level IV Neonatal Intensive Care Unit (NICU), was intubated and put on an oscillator to assist breathing. She spent less than 24 hours in intubation since she was breathing on her own. “Aryah was holding her own without the assisted breathing machine, which is unheard of for a baby with her severe CDH diagnosis,” Courtney says.
To repair the hole in her diaphragm, Aryah underwent surgery at four days old. Mary T. Austin, MD, a pediatric surgeon at McGovern Medical School, Dr. Johnson, and other members of the multidisciplinary team affiliated with The Fetal Center performed the surgery to relocate Aryah’s stomach, intestines, spleen and liver as well as repair the diaphragm. “Aryah surprised everybody with how well she did during and after the postnatal surgery,” says Dr. Johnson.
“Aryah came out with no issues at all, and they were able to extubate her at 9 days old. That’s when I got to hold her for the first time,” Courtney remembers. Aryah stayed in the NICU, receiving care from the nurses, who were “extremely comforting from the get-go and took care of anything our baby needed immediately,” says Courtney. At 11 days old, Aryah was able to get her first visit from her big brother, Rylyn, who was 5 at the time. On September 21, 2016, all four members of the family went home from the hospital. Baby Aryah only required medicine for acid reflux.
Baby Aryah turned one in August 2017 and is surpassing milestones most thought unimaginable. A month after celebrating Aryah’s first birthday, Courtney explains that her baby girl is more advanced than anyone expected. “With CDH, there’s a high risk of developmental delay, but Aryah is doing great,” Courtney says, “Our physical therapist told us Aryah would not be walking until she was a year and a half, but she is running and trying to climb stairs at 13 months.”
Courtney and Robert are overjoyed by Aryah and her miraculous development. “I owe everything to The Fetal Center team because we went from having no hope that our baby would survive to having her with us today. They have always treated us like we’re family. If I had to go through all of this again, I wouldn’t want to go anywhere else.”
To continue Aryah’s pediatric care, Courtney takes Aryah back to Children’s Memorial Hermann Hospital for regular checkups with the Comprehensive Center for Congenital Diaphragmatic Hernia Care, led by Matthew Harting, MD, a pediatric surgeon at McGovern Medical School. The clinic is staffed by a team of pediatric CDH specialists from all associated medical disciplines who provide seamless care from postnatal treatment at infancy through follow-up care during childhood, with a smooth transition into adult specialty care – a unique service offering care for the long-term.
“We love our team of doctors and nurses, and we visit Children’s Memorial Hermann Hospital every chance we get,” Courtney says. “I feel more reassured having the follow-up clinic care for Aryah because I worry that even great pediatricians don’t know the complexities of CDH. It is wonderful that a CDH-specialized team is following her progress.”
Recently, Courtney signed up with The Fetal Center as a support contact for other patients impacted by CDH. “I am here for anyone who finds themselves in a similar situation since I’ve been there firsthand. When I run into a CDH family now, I tell them to contact The Fetal Center at Children’s Memorial Hermann Hospital – they will take care of y’all.”
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Located within the Texas Medical Center, The Fetal Center is affiliated with Children’s Memorial Hermann Hospital, McGovern Medical School at UTHealth, and UT Physicians.