a reason to hope: living with CDH

Four-year-old Eli Stevenson is like most other kids his age in many ways. He started preschool and loves learning math — he’s already a whiz, tackling problems even adults might need a calculator for. He’s often found with a toy in hand and is especially attached to his Transformers Rescue Bots. Eli’s moms, Debbie and Jennifer, say he’s a happy, silly child, who doesn’t know he’s different from others. But in one way, he is.

Eli was born with congenital diaphragmatic hernia (CDH), which means that a hole in his diaphragm allowed other organs, including his stomach, spleen and colon, to move into his chest, preventing his lungs from developing fully. Doctors first noticed the pregnancy was unusual when Jennifer was 18 weeks along, and after additional scans, Eli was given a 50% chance of survival.

“We were terrified”, Jennifer recalls, “but we were determined to give him the best possible chance.”

Jennifer and Debbie were initially referred to a hospital in Boston for prenatal care, but quickly learned that one of the country’s best resources for treating children with CDH was right here in Colorado. The Colorado Fetal Care Center at Children’s Hospital Colorado is one of just a few comprehensive maternal fetal care programs in the world and houses a dedicated CDH program with some of the country’s best survival rates. When Jennifer and Debbie first stepped foot in the hospital two weeks after that initial scan, they met with multiple specialists, including Kenneth Liechty, MD, a renowned pediatric fetal surgeon and co-director of the Colorado Fetal Care Center. He provided one of their first nuggets of hope.

“[The doctors] confirmed he had a left-side CDH and said they thought it was manageable. Once we went there, we never looked back,” Jennifer says. “We knew this where we were supposed to be.”

Eli was delivered on April 27, 2017, surrounded by a whole team of specialists. As soon as he was born, they snapped into action, working hard to stabilize him— a process which ultimately took two hours. Once stable, the team was able to take x-rays of Eli’s body, revealing that his heart had migrated under his right armpit, a risk that could lead to a pulmonary hypertensive crisis. At just 4 days old, Eli underwent his first surgery with Dr. Liechty aimed at correcting his CDH. It was a success.

From there, Eli remained in the Children’s Colorado NICU for two months, constantly surrounded by not only the incredible expertise of his doctors and nurses, but also the constant love and support of his moms. With the help of the Children’s Colorado team, they still found ways to make those early days as special as possible, despite his complicated situation.

“The nurses were all phenomenal and even brought us homecooked meals and would make dinner reservations to give us some time to ourselves, even though we never went,” Debbie remembers. “They helped us make sure we could get Eli baptized. We really wanted to do this before his surgery. Eli was too sick to take to a regular OR, so they ultimately made his room into sterile OR while the chaplain came and baptized him.”

The nurses and doctors weren’t the only ones who helped Jennifer, Debbie and Eli through the rollercoaster of surgeries, chest tubes and tests. The family formed a community with others going through the same thing.

That support network was critical come June 2017, when Eli, Debbie and Jennifer left the NICU for home. Through the ups and downs of Eli’s early years, several ICU visits, COVID-19 and inpatient stays, the Children’s Colorado team has remained an important part of the Stevensons’ lives. They helped set up oxygen in Eli’s home and they have continued to monitor his health, giving him the care that ensures he can continue learning math, growing alongside his brother Zach and being the silly, happy kid he is.

Eli is currently monitored by the Children’s Colorado Pulmonary Hypoplasia clinic every six months and will be followed closely until he’s 18. In the meantime, his family is doing all they can to give back. There is still plenty for the scientific community to learn about CDH and Debbie and Jennifer have dedicated themselves to that cause. They also support other families with babies in the NICU by curating bags with all the essentials, answering questions and sharing Eli’s inspiring story.

For more information about the Colorado Fetal Care Center, please visit childrenscolorado.org/Fetal-Care.

Debbie and Jennifer say their message to those families is simple: “There is always hope.”

© Children’s Hospital Colorado 2020 All rights reserved. Children’s Hospital Colorado complies with applicable Federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability, or sex. • ATENCIÓN: si habla español, tiene a su disposición servicios gratuitos de asistencia lingüística. Llame al 1-720-777-1234. • CHÚ Ý: Nếu bạn nói Tiếng Việt, có các dịch vụ hỗ trợ ngôn ngữ miễn phí dành cho bạn. Gọi số 1-720-777-1234. CFCC-180144D-2022-02