Lyla: Thriving After a Congenital Diaphragmatic Hernia (CDH) Diagnosis

Kayla vividly remembers the moment she walked into the Colorado Fetal Care Center to give birth to her daughter, Lyla.

“I will never forget seeing the two nurses that were so positive. They were smiling and saying, ‘Let’s have a birthday party!’” she recalls.

Kayla and her husband, Eric, really appreciated that positivity after a hard few months of pregnancy.

Receiving a congenital diaphragmatic hernia (CDH) diagnosis

They learned at their 20-week anatomy scan that Lyla had CDH, a rare condition in which the diaphragm doesn’t completely develop before birth. This can allow abdominal organs to enter the chest cavity and affect lung and other organ development before birth. The worst cases can be life-threatening.

A week later, they drove up to the Colorado Fetal Care Center from their home in Colorado Springs. They had their first comprehensive appointment with their entire care team to learn everything about their journey ahead.

“I was very impressed with that team,” Kayla says. “It was really cool to have everyone explain everything to us ahead of time, and it did ease me a little bit with having that comfort of people being like, ‘We are going to take care of you guys, and it's going to be okay.’”

Kayla and Eric found out that Lyla would be born with severe CDH on her left side, which meant her spleen and bowels had moved into her chest and partial liver on her left side. They had weekly ultrasounds and check-ins with the team at our center. They also opted to do an amniocentesis, a genetic test of a small amount of amniotic fluid that looks for genetic conditions and viral infections, per the recommendation of their care team.

“They wanted us to have all the pieces of the puzzle,” Kayla says. “They wanted to make sure they know going in what they were dealing with.”

Preparing for labor and delivery with CDH

A month before delivery, the couple stayed at the Ronald McDonald House near Children’s Hospital Colorado Anschutz Medical Campus in Aurora. At 39 weeks, the couple headed to our Labor and Delivery Unit to welcome Lyla into the world.

“That was a whirlwind of a day,” Kayla recalls.

Dozens of people were in the operating room for Lyla’s birth so they could intubate her right after she was born to prepare for the care she’d need for her lungs. Shortly after, the team placed Lyla on extracorporeal membrane oxygenation (ECMO), a life-saving technology few hospitals have that temporarily supports the heart and lungs while they are working to function properly.

“Overall, the nursing care was truly unbelievable,” Kayla says. “We were so impressed by their abilities, from the nurses to the fellows and residents.”

Successful CDH surgery

The day after Lyla was born, she had her first CDH repair surgery. She had another surgery a few days later to place a larger tube in her chest. Kayla was able to stay down the hall as she recovered, only steps away from Lyla.

“That was amazing. It was so nice to give moms a chance to walk back and forth to the NICU on the same floor and have that time,” Kayla says. “And to have the overnight rooms in the NICU — I cannot tell you how helpful it was to be able to stay at the hospital with her. I really appreciate that Children's Colorado gives parents that opportunity.”

Lyla spent 86 days in our Neonatal Intensive Care Unit(NICU) before finally being able to return home to Colorado Springs. The next months were followed with regular check-in appointments with her Children’s Colorado teams of all different specialties including orthopedics, speech and physical therapy, spinal care, cardiology, dietitians for her feeding tube management, and more.

As a growing toddler, Kayla says Lyla is thriving. She will have a gastrostomy tube for a few more years while she continues to learn how to eat and swallow food and our various teams will continue to monitor her.

“Our appointments are starting to spread out,” Kayla says about Lyla needing less medical care. “She is thriving. We are finally here.”