Hunter’s Story

Hypoplastic Left Heart Syndrome

From week 6-12 of my pregnancy, I cried every day knowing something was wrong. Finally, at 12 weeks I admitted my fear to my husband. What's a husband to say when his wife tells him she has a gut feeling their unborn child or herself will die at the end of the pregnancy? Veteran's Day 2008, during our 20-week ultrasound, came the devastating news of your second son's rare heart condition known as Hypoplastic Left Heart Syndrome (HLHS).

Once we knew our son's condition we were lucky enough to find Dr. Ilbawi and his team in Oak Lawn at Hope Children's Hospital. There Dr. Ilbawi explained to us the three different surgeries our son would need in order to survive. The first surgery known as the Norwood was performed 4-7 days after birth, the Glenn performed around 4-6 months, and the Fontan performed around two years of age.

Hunter arrived in the world six weeks early. After spending six days in the NICU he was taken for his first open-heart surgery known as a "hybrid." Being premature, Hunter was not able to have the Norwood surgery until later. The "hybrid" would give Hunter time to grow bigger until he was ready for the Norwood.

The five-hour surgery was a success. However, within the next week, he showed signs of low oxygen levels. On day 10, when we thought we were going home, Hunter was put back into surgery to have an angioplasty procedure done to allow more oxygenated blood to flow through his heart. The next two days showed signs of improvement and we were told we would be going home in a few days. Five days out of surgery, when we thought we were on our way home for the second time, we were told once again, Hunter needed another surgery. This time they opened his chest and released and adjusted one of the bands that were placed on his Left Pulmonary Artery during the hybrid. The conclusion was that the band was too tight and not allowing enough blood to flow. After a total of four weeks in the NICU, we finally had our baby and were headed home.

Three months home and back to the hospital for Hunter to have the Norwood/Glenn surgeries combined. June 11, 2009, was filled with mixed emotions. We started the day at 6:00 am by handing our son back to Dr.Ilbawi. After his seven-hour surgery, two extra hours to stabilize him, and a fourth chest tube inserted for drainage we were finally able to see him. The day became the longest day for Hunter and truly showed what a fighter he is. Four hours out of surgery and much communication between doctors and nurses, the ER/OR team was called into Hunter's room and his wing of the hospital was closed down because he was internally bleeding and they had to go back in through his chest to find the bleeders to save his life.

After five long weeks of many ups and downs, we were finally sent home.

During a routine heart echo at 11 months of age, we were thrown another curveball. His cardiologist looked at us and said that he had not been able to see his left pulmonary artery (LPA) and he needed a CT scan. We prayed for his LPA to be hidden behind another organ, however, we weren't so lucky. His aorta had become so enlarged that it was crushing his LPA and he needed yet another surgery to correct this issue.

Today Hunter is 19 months old and still awaiting two more surgeries. We are so blessed to have such a strong little boy to call our son. Hunter has taught us to cherish every day and to enjoy all the little things in life. Each day is a journey and although we don't know what the future holds for us, we love the journey we are so blessed to enjoy with Hunter and the rest of our family.

Written by Hunter's Mom