We interrupt my usual content to bring you Heart Month 2021.
February is National Congenital Heart Disease/Defect month. This month has been a very big part of our lives since 2013 when we learned our daughter Ellie would be born with a congenital heart defect. Since then it has been my goal to help spread awareness, especially during heart month.
In August of 2013 we learned at 20 weeks gestation that our daughter Ellie’s heart didn’t develop the way it should have. We didn’t know much about CHD at the time or even about being parents, so we were overwhelmed and more than a little frightened. On December 4th, after 38 hours of labor, Ellie was born. At full term and under 6 lbs, she was very small; a tell tale sign of her CHD. She was stable enough that they were able to let me hold her for about 2 minutes before they rushed her to the NICU.
Ellie would need several surgeries, the first of which came at just 8 days old. It was one of the happiest and more horrifying times in our lives. We would learn over and over again how strong and resilient our daughter was. We would find strength we didn’t know we had and we would learn what it truly means to loves someone more than yourself.
When we were told that Ellie’s heart didn’t develop properly, the doctor that came to speak with us was straightforward, but left us with a feeling of hope. He told us that she would need special surgeries, but many children living with heart defects as severe as Ellie’s were growing and thriving. We were afraid, but we were hopeful. I met another mother who told me about how her daughter was diagnosed. She told me that she was given three options: Heart transplant, these surgeries which were fairly new and risky, or to take her baby home and keep her as comfortable as possible until she passed.
I think about his conversation often and how in just 15 years time (the age difference between our daughters) the presentation of plan of care went from something risky to something hopeful. This progress is what my daughter and every other person living with CHD needs. They need research and funding to help future families find hope. CHD is the number 1 birth defect. Chances are you or someone you know has been touched by it. I would encourage you to read some information- the Pediatric and Adult Congenital Heart Associations have some great information and do some wonderful work for CHD. If you feel so inclined, share some posts or give a donation. We need all the allies we can get.
Welcome to National Congenital Heart Disease/Defect month. Together, we can defeat CHD!