Successful FETO Surgery for CDH Allows Trey to Thrive A Year Later

Healthy and happy. That’s how first-time parents Nora and Tim Courtney describe their 1-year-old son Trey.

His health and well-being are paramount, of course. His happiness is an added bonus.

“He just smiles all the time,” said Nora. “He’s been through hell and back—but he keeps on smiling. He’s one of the happiest kids.” 

It all began before Trey was born, during Nora’s 24-week ultrasound, when it was discovered that his heart was pushed to the side and there was excess fluid in his chest.

Referred to a maternal fetal medicine (MFM) specialist where they live in Indianapolis, baby Trey was diagnosed with a severe right-sided congenital diaphragmatic hernia (CDH). 

CDH is a rare condition that occurs when a baby’s diaphragm—the layer of muscle between the abdominal and chest cavities—doesn’t close properly. Right-sided CDH is even more rare than left-sided CDH. In Trey, who had a severe right-sided CDH, a large portion of his liver and intestines had pushed through the opening and into the chest cavity. The overcrowding organs in his chest put pressure on his heart and lungs, preventing them from developing normally.

With her baby in need of expert help, Nora was referred to the Fetal Care Center at Cincinnati Children’s, where they learned Trey’s CDH was much more severe than the family had realized.

A Sense of Peace after Arriving at Cincinnati Children’s

During an informative two-day visit, Nora and Tim met with the multi-discipline fetal team (Neonatology, MFM, fetal nurse), including Foong-Yen Lim, MD, surgical director of the Fetal Care Center.  

Discussion focused on what the family could expect moving forward. Potential treatment options included fetoscopic endoluminal tracheal occlusion (FETO), a surgical procedure used to treat the most severe CDH cases.   

“They went out of their way to make sure that we had choices and we were an equal part of the team,” said Nora.

“Just 24 hours after being [at Cincinnati Children’s], we felt a sense of peace, thinking this is where we needed to be, no matter what, for what’s best for our son,” Tim added.

The couple gained peace of mind through several factors, including the collective expertise of the fetal care team and the resources available to them across numerous divisions and departments at Cincinnati Children’s.

“We both got in the car after the appointment and knew we were going to Cincinnati Children’s,” said Nora. “In order to feel like we did everything to help Trey survive and thrive, we knew Cincinnati [Children’s] is where we needed to be.”

When talking with Dr. Lim, their biggest questions dealt with CDH specifics, along with the FETO procedure and how Trey might be affected.

“We really wanted to understand what that could possibly look like. They answered all our questions,” said Nora.

According to Dr. Lim, helping the family understand the condition and what lies ahead—including challenges and roadblocks the baby may face after birth—are the primary goals when the fetal team meets with parents.

“We were quite transparent with them that this procedure may not work for Trey,” said Dr. Lim. “But from the very beginning—even as early as that first meeting that we had with the family—we wanted them to feel supported, regardless of how they decided to proceed.”

Successful FETO Procedure, Constant Communication Throughout

After considering their options, Nora and Tim chose to move forward with the FETO procedure. Dr. Lim, Jose Peiro, MD, PhD, Kara Markham, MD, and David McKinney, MD, performed the surgery and Tim received regular updates from a nurse in person and via text messages. 

Nurses in the operating room are great at communicating with families, explained Dr. Lim. The fetal team takes it a step further with updates after each stage of the procedure. 

“They texted me play-by-play updates. It was awesome,” said Tim. “My wife and my baby were in there—my whole world—so it was good to have those updates to know what was going on.” 

After the procedure, the care team provided Tim with a full recap, and a few hours later Nora was updated after coming out of sedation.

Three Months in NICU, Back Home to Indianapolis 

After the tracheal occlusion was reversed a few weeks later, the family remained in Cincinnati so Nora and Trey could continue to receive the best care possible. Born a few months later in June 2021, Trey spent the next three months in Cincinnati Children’s Newborn Intensive Care Unit (NICU) before going home. 

“For the first month, we weren’t even able to hold him,” said Nora. Trey was on ECMO, a heart-lung bypass machine for 18 days. Beth Rymeski, DO, and Dr. Lim repaired his large right-sided diaphragmatic defect while he was on ECMO. 

It was a difficult time, but they remained focused on what was best for Trey and continued to ask questions and provide input as active team members. 

“What is unique about fetal patients is that usually by the time the baby is born, the family is more knowledgeable about the baby than the nurses caring for them,” said Dr. Lim. “That’s how much information they’ve been provided." 

Indeed, Tim and Nora said they learned a great deal during daily meetings with the team. “We had a crowd every day for rounds. They were all great,” said Tim.  

Back home, Trey continues to do well. He’s off oxygen and is growing and reaching developmental milestones like crawling and eating. 

A big reason for Trey’s progress is the family’s active involvement, which Dr. Lim considers a crucial factor for a baby’s successful recovery. 

Dr. Lim points out that clinicians only determine part of a child’s success. They are highly involved in the beginning, but the family plays the leading role beginning the moment the baby goes home, and for many years afterwards.

“We definitely have seen how a lot of these babies grow and develop into young adulthood,” said Dr. Lim. "Family involvement is definitely helping a lot of these kids to realize their full potential.”

Nora and Tim are committed to doing whatever it takes to provide the best life for their son. 

“We knew we had to be strong for him,” said Nora. “So in our minds, we’re focused on going forward.” 

(Published November 2022)