Meet Alyssa

Child's Diagnosis: Atrial Ventricular Septal Defect with a common valve (AVSD)

Has Kerrington’s Heart impacted your journey? If so, how?:

It is really comforting knowing that their is a group for support and a way for my daughter to know she is not alone. And we enjoy participating in the 5k as a way to give to other families in need.

What’s one thing you wish you’d been told at the beginning of your journey?:

Honestly I'm not sure. The beginning is such a mix of emotions and trying to figure things out.

What’s one word you would use to describe your journey and why?:

Unknown. For us there was so much that was " let's wait and see". You learn to just trust in the doctors and that they know what is best. When we would be expecting one thing to happen usually it would change.

Please share a little bit about your story:

Our daughter Alyssa was diagnosed with a CHD when I was 36 weeks pregnant after she was measuring small in the 3rd trimester. After she was born she was sent to the NICU for observation but at the time she was doing really well, got sent back to us and went home 2 days later. We went for monthly checkups with the cardiologist and at first was told she would need surgery at 4-6 months old. She continued to have great checkups and avoided surgery until she was 2 and a half. So she had open heart surgery to repair her defect at 2 and a half at Cincinnati Children's hospital. She had surgery on a Monday and was sent home on Thursday! We were amazed at how quickly she recovered. She now goes every year for her checkups and continues to do well but is on medication daily. She is healthy and doing great right now but we know there may always be a possibility of another surgery in her future if her valves start to weaken. Alyssa continues to amaze us with the person she is becoming. She is tough, smart, kind, resilient, and she doesn't let anything stop her from doing what she wants. She has been dancing ballet since a month after her surgery and started running last summer.