Lilly's Story

Although the initial surgery was considered a success, Lilly’s body reacted to the surgery by generating its own obstructions in her left ventricular outflow tract that delivers oxygenated blood from the heart to the rest of the body.  Ten short months after her initial surgery, Lilly was back in the OR to have a resection performed on the blockage.  By the time she was three, her blockage had grown back, leaving 85% of her outflow tract obstructed yet again.  Her third open heart surgery was in March of 2021. Her surgeons were aggressive in clearing out the blockage in hopes of discouraging the blockage to regrow. Just a few days after being discharged, Lilly was lethargic and having difficulty breathing. She was transported back to the hospital where an echo showed that she had developed new holes in her heart and the leaflets in her valves. Little Lilly had her 4th open heart surgery just 10 days after being discharged.

lilly in hospitalLilly is now 8 months post-op from open heart #4 and is the epitome of why these children are called heart warriors.  She is smart, delightfully naughty, and has an extraordinary sense of humor.  She’s energetic and lively, and thriving. 

Throughout her journey, Lilly has relied on dozens of units of blood donations. Each open heart surgery requires multiple units of blood for Lilly to go on a cardiopulmonary bypass machine that keeps her blood pumping throughout her body while surgeons make the necessary repairs to her heart.  The surgeries are complicated, and would not be possible without blood donation.  With all the risk and “what ifs” families encounter, Lilly’s family is grateful to know that she will have the blood available that her team needs to have a successful surgery and a hopeful recovery.  Blood donations make this possible.