Our Heart Warriors
Shortly after birth on July 18, 2002, Alexis was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) and Critical Aortic stenosis. If left untreated, HLHS is 100% fatal. A team of physicians informed me of our options; a series of corrective surgeries, a heart transplant or compassionate care (do nothing at all). After careful consideration and several meetings with Dr. Bailey, Dr. Kuhn and the cardiac transplant team, we opted for Alexis to be listed for a heart transplant. Little did we know, Alexis had quite a fight ahead of her. She remained in the NICU at Loma Linda University Children’s Hospital while she waited for the perfect heart. She required numerous medications, had a balloon septostomy at 1 month old, was intubated for many months, had multiple seizures, coded several times and had a broviac placed to administer medications when she was 5 months old.
In January of 2003, Alexis’ lungs were failing and her team called a meeting to discuss our option at that time. I asked that we wait just a little longer and they agreed. On January 22, 2003 at 4 a.m., I received a call from our transplant coordinator letting me know that a heart had been found for Alexis. After six months and four days of waiting, Alexis received her second chance at life. Alexis had a very difficult recovery due to being so ill while waiting for her transplant. 1 month post transplant, she failed extubation numerous times and eventually required a tracheostomy. At the age of eight months old, on March 16, 2003, Alexis was discharged from the NICU at LLUCH. Alexis is now nine years old and full of life. She plays softball, loves to dance and adores Justin Bieber.