Hannah, born 2012

When Hannah was born we had no idea she was sick. She had a concerning color at birth, but seemed to recover quickly. The day after she was born she stopped breathing, turned blue and the nurses could not find her heartbeat. Thankfully, they were able to revive her with stimulation. The doctor labeled this a choking incident and sent her home with us. Hannah was a very easy baby, because she slept all of the time. I remember asking our doctor if it was normal and he mentioned that babies this young sleep a lot. When she was just about three months old she came down with RSV. It hit fast and furious and within 2 days of getting sick she was in the hospital. She didn’t even last a full 24 hours in our local hospital before they were air-flighting her to a different hospital to be intubated. She was in Central Valley Children’s Hospital for a week before they decided to look at her heart, which continually appeared larger than normal on chest x-rays. Within hours of this first echo she was on a jet being flown to Lucile Packard Children’s Hospital. 

She was diagnosed with Anomalous Left Coronary Artery to the Pulmonary Artery (ALCAPA). To put it simply, her plumbing was wrong and her heart was receiving de-oxygenated blood. The longer she lived with this condition the more damage it caused to her heart and the worse things would be for her. ALCAPA is a very rare defect and to discover it on top of a lung disease was nearly unheard of. They explained to us that giving Hannah a 50/50 chance, was probably optimistic. At Lucile Packard, Dr. Reddy performed her repair. He had prepared us saying that Hannah had a 90% of coming out of surgery on ECMO. But miraculously, by the grace of God, after only 82 minutes of being on bypass Hannah came out without the aid of ECMO. It was one of the best moments of my life! She had an extremely long and difficult recovery including multiple collapses of her lungs and one horrible, very traumatic code blue requiring CPR. But she made it home with a feeding tube and a methadone taper. 

We are now almost 9 months past her surgery date and she just had her first ever normal EKG. She only requires aspirin daily. She does have a small mitral regurgitation and has some scar tissue, but her cardiologist reassures us that she will be able to live with both of these things! We thank God every day for our little miracle!

Story by Hannah’s mom, Jeanna - California