My daughter, Tessa, was born with what we were told was “a one-of-a-kind heart.” She had her first open-heart surgery at 9 days old and an emergency second surgery the very next day, followed by a week on ECMO. She spent 2 and a half months in the hospital recovering and getting in a good place to come home.
We enjoyed 2 months at home with our sweet girl when she went in for an exploratory heart catheterization with an expected 24-hour stay. What we weren’t expecting was a call the next morning that she had gone into cardiac arrest and was currently intubated and on paralytics. We spent the next few days wondering what was happening. She went into cardiac arrest 2 more times over 3 days and it was ultimately decided she would need a heart transplant. Her team of doctors wasn’t sure how long it would take and if her body could handle the weight without help. She spent the next few weeks completely paralyzed, she would code as soon as she woke up, and was placed on the Berlin Heart.
Tessa waited for 8 long months until we got the call that her miracle heart was available. She received her transplant, but things took a turn and we weren’t sure she was going to make it. Her new heart completely stopped working and she was placed on ECMO. She needed a very high-risk heart cath to stent her pulmonary arteries. It was hard because she was fresh out of surgery and there were risks of damaging the sutures already in place. The stent placement went without a hitch and our miracle baby pulled through. She spent 11 months in total in the PICU. She had had a very long road but will be 3 years old and 2 years post-heart transplant this February, Heart Month! She is amazing and we love to share her story to raise awareness for CHD.