After our daughter's diagnosis, we had so much hope because of the advancements in CHD research over the past 20 years.
We're raising funds for The Children's Heart Foundation to continue to advance the diagnosis, treatment, and prevention of congenital heart defects by funding the most promising research.
Here's our story:
At our daughter Elsie's 20-week anatomy scan, we learned she had a serious congenital heart defect (CHD) called Hypoplastic Right Heart Syndrome. Essentially, this means the right half of her heart hadn't developed correctly.
Over the next few months we met with many doctors and learned that Elsie would need three open heart surgeries in her first few years of life.
It was a scary time, but we had so much hope.
We met with other heart parents who told us about their heart warriors who were thriving. Doctors and nursess encouraged us with stories of older patients who played sports, marched in band, and did all the things heart health kids do, just with a little more care. We truly believed that CHD research and advancements meant that our precious little girl would live a full life.
Elsie was born on April 28, 2021. She loved holding hands and listening to stories read aloud -- her favorite was The Poky Little Puppy. She made the sweetest sounds, and was the bravest person I've ever met.
During her first week of life, Elsie's doctors constantly told us how well she was doing. We scheduled her first surgery and cheered her on as she exceeded everyone's expectations.
Unfortunately, everything changed on May 5, 2021, and Elsie died in our arms. Her life was tragically short, but it was filled with so, so much love.
Help us share hope with future heart parents!
We're raising money for continued CHD research to give other parents the hope that we felt after her diagnosis. We’re raising money so that someday other heart parents won't have to say good-bye.