Hypoplastic Right Heart Syndrome

SSM Health Cardinal Glennon Children’s Hospital

Lilly's Story

When you first meet Lilly, you are taken aback when she starts a conversation with you because her small stature does not compare to her big personality. Lilly was born with Hypoplastic Right Heart Syndrome. Hypoplastic Right Heart Syndrome is a congenital heart defect in which the right-sided structures (tricuspid valve, right ventricle and/or pulmonary valve) are underdeveloped or not formed.

Born two weeks shy of her due date, Lilly had a quick nine-day-stay in the neonatal intensive care unit. In true “Lilly fashion”, she quickly showed them who was boss, meeting milestones and reaching goals. At three months old, Lilly was rushed to Cardinal Glennon due to complications. Having to undergo three open-heart surgeries and a procedure to keep fluid from developing around her lungs, Lilly spent three months in the hospital.

Lilly led a somewhat normal life until she was 18 months old. She re-entered the hospital for her fourth open heart surgery. While recovering, Lilly developed a high fever and her liver and kidneys began shutting down. Lilly miraculously recovered after nearly a month in the hospital.

Lilly was scheduled for a cardiac catherization in August of 2017, which led to her fifth open heart surgery. This was Lilly’s shortest stay in the hospital and she has remained home ever sense. There is no cure for Lilly’s condition, and what the future holds is unknown.

As of this moment, Lilly is a spunky little girl who enjoys playing with her siblings. Her favorite accessory is a big hair bow. She loves ice skating and Peppa Pig.

How CMN-STL Funds Help Lilly

Lilly has been fortunate to have access to the Pediatric Hybrid Cardiac Catheterization Suite, which was paid for in part by money raised by Children’s Miracle Network Hospitals of Greater St. Louis. The Hybrid Suite allowed Lilly’s doctor to diagnose and fix her heart problem all in one procedure, which allowed for faster healing and recovery.

January 2023 Update:

As of today, Lilly is a thriving, strong sassy seven year old little girl. With her rare diagnosis of Hypoplastic Right Heart Syndrome she has currently endured six open heart surgeries. For now Lilly has been given a year break from her routine medical visits.  She loves second grade, hanging out with friends and family, tumbling at her gym and tons of ice cream! We adore her infectious smile, positive attitude, constant wittiness and love for everyone she comes in contact with. We unfortunately do not know what the future holds for Lilly but continue to have faith in nonstop funding which allows brilliant minds to continue medical research that we pray one day allows Lilly to enjoy the most amazing life imaginable!