Adeline was born with Hypoplastic Left Heart Syndrome (HLHS). HLHS is a complex and rare heart defect present at birth (congenital). In this condition, the left side of the heart is critically underdeveloped. In HLHS the left side of the heart can’t properly supply blood to the body because the lower left chamber (left ventricle) is too small or in some cases doesn’t exist. In addition, the valves on the left side of the heart (aortic valve and mitral valve) don’t work properly, and the main artery leaving the heart (aorta) is smaller than normal. Adeline also had a very rare case of HLHS which was a restrictive atrial septum. Typically, kids with HLHS need 3 surgeries: one within the first week of life, 2nd one between 4-6 months old and the 3rd between 2-4 years of age. Adeline was a unique case and didn’t follow the traditional guidelines. Addie had a cardiac cath the minute she was born to balloon the septum. 4 days later she had her first open chest procedure called the hybird. She recovered well however she got sick the day before our discharge, so we stayed until she recovered from her first open heart surgery called the norwood at 6 weeks old.  She was able to come home after 3 months. At 5 months old, Adeline had her 3rd open heart surgery called the glenn. Adeline recovered quickly after a 10-day stay. In March 2020, Adeline had her 4th surgery which was to open up her pulmonary veins as we discovered she also had pulmonary vein stenosis. After this, we were able to live life normally. May of 2022, Addie had the fontan. 2 weeks later she got an infection and had to go back to the operating room resulting in her 6th surgery. We spent over 40 days. In September and December of 2022, she had been admitted for “fontan tune ups.” We were told the fontan physiology is not working for Addie. In December 2022, we received a transplant evaluation. During that time, they found out that there was another surgery to fix Adeline and we do not need to go down the transplant route. In January 2023, Addie had a fontan revision which resulted in her 7th surgery. In this surgery, they put a PD catheter in her belly to drain fluid. We had hoped that this was going to be temporary. In June 2023, Adeline had another cardiac cath and we saw that the fontan pressures just aren’t going down and she would need a transplant. Here we are in patient and listed as 1a since beginning of October and waiting for our gift.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.