Bowie's CDH Story

This is Bowie. He was born with prenatally undiagnosed Left-Sided Congenital Diaphragmatic Hernia (LCDH) and he was a complete surprise to all of us.

Bowie is the youngest of three. We planned to have him at home. We had an anatomy scan that was considered normal at the time, so we kept right on preparing for our home birth, excited and confident. At 38 weeks, I went into labor, but something just didn't feel right, so we decided to go to our local hospital instead.

I had a lot of demands when we got there. I wanted to give birth alone, with the guidance of medical staff and that's exactly what we did. Our hospital staff was incredibly respectful of my wishes, and I even had the honor of catching him myself. That moment was everything.

But we quickly realized he couldn't breathe. He was intubated, and we were shocked. The hospital staff showed us his X-rays — they had never seen a baby's anatomy look that way and they sent his scans to Johns Hopkins All Children's Hospital. We were transported by ground, met Dr. Kays, and our whole lives changed.

Bowie had a large defect, missing 45% of his diaphragm, with partial liver up, stomach, colon, bladder, and spleen. Despite all of that, he very quickly recovered. We were home after a month.

It was a whirlwind. We made new friends. We watched our heart walk down the hallway in a little incubator. We learned new terminology, new towns, new routines and we came back together even stronger.

And now? He is thriving. 90th percentile. He eats. He has some delays in motor function, but nothing too worrying. Thanks to the amazing care we received, our little family made it and our little Bowie is thriving.