UPDATE: Griffin received the gift of life in late August and after a successful heart/liver transplant, he is currently recovering at home!
Griffin was born “healthy” on October 12, 2007, in southern California. Within hours he was transferred to the NICU as mother’s intuition indicated something was very wrong. There they did an echocardiogram and found that Griffin’s heart had not formed properly. He was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). He was quickly sent to Children’s Hospital of Los Angeles (CHLA) where at 3 days old, he had the first of his three life saving surgeries. The next two surgeries Griffin needed were the Glenn (at 4 months old) and the Fontan (at 2 ½ years old), but he continued to recover well. Over the years Griffin has needed several heart catheterizations and procedures to monitor his health and heart function. Today Griffin is 15 years old, and although he was born with HLHS, this heart warrior has lived a fairly healthy life. Then suddenly in late 2022, Griffin suffered a GI bleed from an unknown source. Tests were performed which showed some small varices or enlarged veins. The team checked again two months later to find the varices had grown in size, requiring the placement of two bands to attempt to minimize the risk of bleeding. About 2 weeks after the procedure, Griffin suffered a sudden, very large, and very scary episode of vomiting blood. He was rushed to the hospital where he was given 4 units of blood, and so started his journey to transplant. Griffin’s heart defect has caused Fontan Associated Liver Disease (FALD), and he now needs not only a new heart, but a new liver as well. This is very rare in pediatrics and has only been performed about 30 times in the United States.
RaeRae is honored to provide assistance to Griffin and his family as he awaits a life-saving surgery at Phoenix Children’s Hospital that could soon make history, as its never been done in Arizona.