I am walking for Ruby!
At two days old, Ruby was diagnosed with multiple congenital heart defects. Ruby was asymptomatic, but her defects were detected due to routine newborn screening. This screening kept us from taking Ruby home, and instead resulted in our transfer to Texas Children's Hospital where Ruby was diagnosed with Tetralogy of Fallot with Pulmonary Atresia, and a condition called PAPVR. In other words, Ruby had a large hole in her heart (VSD) and her pulmonary valve did not form. She was receiving no blood flow from her heart to her lungs. Had we taken Ruby home on day 2 of life, we would have likely lost her at home.
I walk for mandatory newborn screening.
Ruby had her first procedure at 10 days old. After two lengthy hospital stays - Ruby was finally home to await her "full repair."
In January of 2020 at 5 months old, Ruby underwent planned open heart surgery to correct her heart. While recovering, Ruby went into sudden cardiac arrest and required over 40 minutes of CPR. Complications from the arrest included a massive right hemisphere stroke, brain swelling, and non-resolving seizures. But the swift CPR Ruby received in the CICU saved her life and kept blood pumping throughout her body.
I walk for CPR.
While her road is not without twists, turns, or bumps - our Ruby the Rockstar is just that! She continues to defy odds and accomplish things her MRI says she shouldn't. We were told she may never eat independently, breathe on her own, walk, or talk. I am proud to say that Ruby does all of the above. We are so blessed by Ruby's strength.
Congenital Heart Defects occur in about 1 in 100 births. They are the most common birth defect in babies.There are no cures, only palliative treatments aimed at keeping the heart functioning as close to normal as possible. Ruby will require multiple surgeries throughout life. She wears her "zipper" - an affectionate name for her scar - proudly.
I walk for CHD.