Emma: Overcoming the Odds and Congenital Diaphragmatic Hernia

Today, Emma is an active 5-year-old who loves to play soccer, run and dance ballet. For her parents, Matt and Kelly, seeing their daughter’s personality and interests come to life is extra special, because they weren’t sure she’d ever get the chance. When Kelly was just 12 weeks into her pregnancy, her doctors diagnosed Emma with a rare condition called congenital diaphragmatic hernia, or CDH. Her lungs were developing below the fifth percentile, and her doctors at the time said the severity of Emma’s condition was not compatible with life.  

But Matt and Kelly weren’t ready to give up. At the time, the family was living in Seattle, but after learning about the CDH expertise and experience at the Colorado Fetal Care Center, they decided to relocate to the Denver area to give Emma the opportunity to heal and thrive.  

“From the moment we met with the team, we just knew. They gave us a different set of hope and confidence that we could have never expected,” Kelly says. “We knew that our baby was going to have a chance, and we had to do everything we could to give her the best chance possible.” 

Kelly and Matt had their first care team meeting 20 weeks into the pregnancy and immediately felt they were in the best hands possible. They were joined by more than a dozen experts, bringing together multiple disciplines, including neonatology, surgery, maternal fetal medicine, genetics, social work and more — all dedicated to creating a tailored care plan for Emma’s delivery and CDH surgery.  

“I distinctly recall a really comprehensive meeting that included, I want to say, 15 different specialists. We got to know them as people and understand their roles well before Emma was here,” Matt says. “It gave us a good level of comfort to just feel prepared in terms of what to expect and how intense it was going to be and who we were going to count on for different things.”

At 36 weeks, Kelly delivered Emma at the Colorado Fetal Care Center’s dedicated Labor and Delivery Unit, allowing both to recover just steps from each other. Because Emma could be delivered in the same place where she would ultimately receive treatment and surgery, the team was able to remove an incredibly dangerous variable: transport.

“We knew the likelihood of losing her because of the transport was high, and so it truly was a life and death thing,” Matt says. “The ability for Kelly to deliver at Children’s Colorado and have Emma be able to be treated in the same hospital gave her an infinitely better chance to live.”

Emma was placed on heart-lung bypass within her first 30 minutes after delivery, and by the next day, she was ready for surgery to repair her CDH. Within just 10 days, she had healed enough to come off bypass. Though her recovery was tough at times, the family kept moving forward, thinking about the beautiful future ahead of Emma.

Now, they’re living that future.

“Emma has so much personality and is so feisty and strong willed,” Kelly says. “Those are the things that we saw in her as a baby — her fight to survive. And now we get to see them come out in different ways through her passion for the things she loves to do.”