Today, Ella would have been two and a half years old. Instead, she continues to watch over her parents and new baby sister as an angel. Everyday we miss that beautiful, feisty little baby.
In honor of the amazing personality and fighter Ella was, and for the 1 in 100 families who are affected by congenital heart disease, we would like to raise awareness and funds for the Pediatric Congenital Heart Association - Virginia (PCHA-VA).
On July 11, 2016, just a mere four days after she was born, Ella had her first of what was to be three open heart surgeries to alter the way blood flowed through her body. Having been born with Hypoplastic Left Heart Syndrome, Ella did not have a functioning left side of her heart. For kids with HLHS to live, the blood flow is eventually redirected so the right side of the heart no longer pumps deoxygenated blood to the lungs, but instead pumps oygenated blood to all parts of the body. The deoxygenated blood is redirected to flow passively to the lungs. This change in anatomy is generally completed through three open heart surgeries: the Norwood, the Glenn, and the Fontan.
Ella had a successful Norwood procedure but the right side of her heart was never strong enough to pump blood to her entire body. She was placed on ECMO, a bypass machine, in the hopes that her heart would be able to rest and gain the strength necessary to do what it needed to do.
Unfortunately, she was never able to do that.
But, because of organizations like PCHA-VA who are working to conquer all congenitive heart disease with education, support, research, and awareness, we were given hope and 15 days with Ella that we would not have had otherwise. Although Ella was sedated, her parents - Kristen and Jason - were able to sit with her, talk to her and read to her for that time.
Each dollar contributed to PCHA-VA will help other families find that hope, that time to connect and love.