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Ian, born 2004

When I gave birth to my son Ian on November 8, 2004, I had no idea that anything was wrong with him. The hospital where I gave birth did not have an infant ICU but we were lucky enough to have a pediatrician who believed in being cautious and knew in his heart something was wrong with Ian. He called in a personal favor and Dr. Truccone, who is now our son's pediatric cardiologist, came to the hospital and performed an echocardiogram. (The nurses told us this had never been done at their hospital on an infant before). It was then that Dr. Truccone told us that Ian had Truncus Arteriosus and would need to be transferred to Children's Hospital for surgery. He would need surgery to add a pulmonary vein to the right ventricle and to close the VSD. Unfortunately, this was not a permanent fix and Ian will need to have an undetermined amount of surgeries in the future to replace the conduit as he grows.


The staff at Children's Hospital were absolutely wonderful. When we walked into the NICU the nurse was waiting for us with a printout ready to explain to us exactly what was wrong with Ian and what had to be done to correct his condition. Ian was allowed, after a week, to go home to wait for surgery. We took him for a follow up who did another echocardiogram, said Ian was fine and sent us home. About two hours later, he called us at home and told us to take Ian to the NICU. By the time we got Ian to the hospital, he was in severe congestive heart failure. This was one of the most heartbreaking and terrifying moments in my husband and my life. The doctors kept telling us they were so sorry about Ian, leading us to believe he would not make it through the night. But not our little Champ! He fought through the night and with the doctor's help by the next day, he was already improving.


Over the next few days with lots of prayers and a show of strength like I have never seen before, our son surprised all of the doctors and nurses and started to get better very quickly. The operation, which had been postponed, was back on.


On December 6th, 2004, with Ian exactly one month old, Dr. Walters and his incredible team took our little champ into the operating room for the first repair. Once again, Ian came through like the tough little fighter that he is. He spent 10 more days in the PICU and NICU and they sent us home two days early!


Ian is now doing fantastic! Technology is moving along so quickly, we hope that one day in the near future the doctors will tell us they have a more permanent fix for Ian and other children like him.


Story by Ian's mother, Crystal - Michigan 

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