LJ’s CDH Story

After returning home from what was supposed to be a routine 20-week ultrasound, my phone rang. My doctor’s voice shattered my reality. Our son possibly had Congenital Diaphragmatic Hernia (CDH), and I was being referred immediately to Children’s Hospital of Philadelphia (CHOP). I had never heard of CDH. In that moment, the future I imagined vanished. The fear was suffocating. I broke in a way I didn’t know was possible.

Once the diagnosis was confirmed at CHOP, life became an endless cycle of appointments, scans, and waiting rooms heavy with dread. We learned LJ had left-sided CDH—his liver, stomach, bowel, and gallbladder had all moved into his chest. Just when I thought my heart could not take any more, we were told he also possibly had coarctation of the aorta, meaning open-heart surgery could be next. I lived in constant fear, grieving a future that hadn’t even arrived yet.

At 37 weeks, I delivered the most beautiful baby boy. I barely saw his face before he was rushed away and intubated. Watching a machine breathe for your baby is devastating. Not being able to hold him is torture. But the worst pain was the helplessness—standing beside his bed, begging silently for him to survive, hour by hour.

At just two weeks old, LJ underwent his first surgery to repair his diaphragm. We believed this would be the turning point. Instead, we watched as doctors surrounded his bed, alarms sounding, tears streaming down our faces. His levels were dropping. His tiny body was fighting too hard. He needed more support. LJ lay motionless as the oscillator breathed for him, a sound that will haunt me forever.

Two weeks later, our baby faced open-heart surgery. And still, he fought. Every single day, he chose life. On the 81st day, we were told our miracle boy was going home.

The journey wasn’t over—he came home on oxygen and with an NG tube—but he came home. LJ is proof that even in the darkest moments, miracles can grow from unimaginable pain. Today, he is one year old and thriving.