Liam’s CDH Story
Liam was diagnosed with congenital diaphragmatic hernia (CDH) at our routine anatomy scan. In an instant, the excitement of pregnancy turned into fear. We were told there was a hole in his diaphragm, allowing his stomach and bowel to move into his chest cavity and crowd his developing lungs. Receiving that diagnosis felt like the ground disappeared beneath me.
It was terrifying, but we chose to hold onto hope, even when the statistics felt overwhelming. After researching and connecting with specialists, we reached out to Johns Hopkins All Children’s Hospital and made the life-changing decision to relocate to Florida to be under the care of Dr. Kays and his team.
Delivery day looked nothing like I had imagined. There were no immediate cuddles or quiet moments. As soon as Liam was born, he was intubated and rushed to the hospital’s CDH unit. He fought hard during his first few days of life, but eventually, his tiny body grew too tired. Liam was placed on ECMO, a life-support machine that took over the work of his heart and lungs, allowing his body to rest.
Seeing your newborn connected to a machine that is keeping him alive is something no parent can prepare for. It was terrifying. But it was also a miracle. ECMO gave Liam time—time for his lungs to grow stronger, time for his body to stabilize, and time for hope to grow alongside him.
The day after being placed on ECMO, Liam underwent his CDH repair surgery. Dr. Kays discovered that his stomach, bowel, spleen, liver, and intestines had all moved into his chest cavity. He had only 15% of his native diaphragm, which classified his defect as a size C defect, and 15% of his liver had herniated upward.
His journey on ECMO was not without complications. Liam developed high bilirubin levels that required exchange transfusions and circuit changes. Each change triggered inflammatory responses, making it more challenging to separate him from the machine. After 28 days, Dr. Kays made the courageous decision to trial Liam off ECMO. By God’s grace, he did well. The following day, his ECMO cannulas were removed—a milestone we will never forget.
But CDH is rarely a straight path.
After extubation, Liam struggled with persistent vomiting. What we initially believed was reflux was later identified as a cyst-like structure in his duodenum that prevented his stomach from emptying properly. He underwent another surgery, where Dr. Kays discovered and removed a duplication cyst. During that same procedure, he received a Nissen fundoplication and a G-tube to support his feeding journey.
The day we brought Liam home felt surreal. Walking out of the hospital without monitors, without alarms, and without a team of nurses surrounding us was both freeing and overwhelming. Home did not mean the journey was over. CDH does not simply disappear, but it meant Liam was strong enough to continue growing beyond hospital walls.
Today, I see the warrior in him every single day. The baby who once depended entirely on machines to breathe now fills our home with laughter, personality, and a joy that is impossible to measure. His scars tell a story of survival. His smile tells a story of resilience.
CDH has been the hardest battle our family has ever faced. But it has also revealed the strength of a tiny human and the brilliance and dedication of medical teams.
Liam is our miracle. Our fighter. Our CDH warrior.
CDH affects approximately 1 in 2,500 babies, and behind every statistic is a family whose world changed in an instant. Awareness matters. Research matters. Specialized care matters.
If our story shows anything, it is that there is hope, even in the most uncertain moments. There are dedicated doctors pushing the limits of medicine. There are tiny warriors fighting battles bigger than their bodies. And there are parents learning they are stronger than they ever imagined.
To the families walking this road right now: you are not alone. Hold onto hope. Ask the hard questions. Advocate fiercely. Celebrate every milestone, no matter how small.
Because CDH may be part of Liam’s story, but it does not define his future.
