Owen’s CDH Story

We found out we were expecting our first baby in early December 2024, and we couldn’t have been more excited. At the time, I was working as an ER nurse and was lucky enough to sneak little peeks at ultrasounds every so often. I’m definitely not an expert, though, so I never noticed anything out of the ordinary.

At our 20-week anatomy scan, we found out that our son, Owen, had left-sided congenital diaphragmatic hernia (CDH). My OB explained that there was a hole in his diaphragm, allowing some of his organs to move into his chest and pushing his heart over to the right side.

We left that appointment with so many unanswered questions and immediately made the mistake of Googling everything.

A week later, Maternal Fetal Medicine confirmed Owen’s diagnosis. His initial prognosis wasn’t great, and we were completely overwhelmed. Thankfully, we had amazing doctors who patiently explained everything over and over whenever we needed them to.

We were given the option to stay local in Louisville or travel to Cincinnati Children’s, where they specialize in CDH care. Without hesitation, we chose Cincinnati.

From our very first phone call, the fetal care team was incredible. They walked us through every possible outcome, the procedures Owen might need, and what life could look like after delivery. We spent the next several months traveling back and forth for ultrasounds, testing, and appointments. Eventually, our appointments became twice-weekly ultrasounds. Thankfully, I was able to have those done with my MFM doctor in Louisville, which made things a little easier.

We were told Owen’s CDH was moderate to severe. His bowel, stomach, and part of his liver had moved into his chest, and his heart had shifted to the right. There were so many unknowns, but we tried to take everything one appointment at a time.

On August 3rd, we relocated to Cincinnati, almost three hours from home, to prepare for Owen’s arrival.

On August 14th, I was induced. After 31 hours of labor, Owen arrived on August 16th at 1:31 a.m.

We had been warned that we might not hear him cry when he was born, so hearing the tiniest little whimper the moment he arrived was simply amazing. We got to touch him for just a few seconds before the team took him next door to begin caring for him.

A couple of hours later, Owen was placed on ECMO—the outcome we had feared most.

The very next day, he underwent surgery to repair his CDH, and thankfully, the surgery went well. His surgeon told us that his liver was surrounded by a “sac,” which was why his liver had never fully moved into his chest.

Thank goodness for that crazy little sac.

At the time, the doctors couldn’t close Owen’s abdomen completely because he wasn’t responding well enough, so that procedure had to wait until about a month later.

Our time in the NICU was filled with some of the hardest moments of our lives, but it was also filled with incredible people. The doctors, nurses, respiratory therapists, and every provider we met at Cincinnati Children’s became such a huge part of our lives, and we will forever be grateful for the care they gave our son.

Owen spent 14 days on ECMO. Once he was finally taken off, I was able to hold him for the first time—17 days after he was born.

It was a moment I had been waiting and praying for.

Owen remained intubated for 31 days before eventually moving to high flow and then a nasal cannula. Feeding became one of his biggest challenges, something that is common for many CDH babies. He eventually came home with a GJ tube and oxygen.

After 81 days in the NICU, we finally got to bring our baby boy home on November 5th—which also happened to be my husband’s birthday.

It was the best birthday gift we could have ever asked for.

Since coming home, Owen has continued to absolutely amaze us. We still travel to Cincinnati every few months for follow-up appointments, but he continues to thrive. He now takes a bottle and eats everything!

At nine months old, Owen was able to switch from a GJ tube to a G-tube, which we thankfully no longer have to use. We are hopeful that it will be removed very soon. He still needs oxygen at night while we wait for another sleep study, but every step forward feels like another victory.

Owen recently turned one, and he is the happiest little guy.

After everything he has been through in his first year of life, watching him thrive is something we will never take for granted.

During my pregnancy, reading other CDH stories gave me so much hope during some really difficult days. Seeing positive outcomes helped me believe that one was possible for us, too.

Now, I hope sharing Owen’s story can give another family that same hope.

Our journey with CDH has been filled with fear, uncertainty, and more challenges than we ever could have imagined. But it has also shown us the incredible strength of our little boy and reminded us that there is always room for hope.

Owen is our Tiny Hero, and we are so grateful for every single day we get to watch him grow, thrive, and show us just how strong he is.