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Michael, 1998

Michael, born 1998

Michael's HLHS was undiagnosed in the prenatal ultrasound so he spent his first night in the nursery with all the other "normal" babies.  When I went to peek in on him the next day, I was shocked to find out that he was taken to the NICU with breathing trouble. I will never forget seeing him surrounded by medical staff, with wires running in and out of his tiny body.  "Probably just a virus or something", said the nurse. "99% of the babies that come in here are fine in a day or so". Michael, we learned in a few hours, was the 1% and had a serious heart defect which would either require a transplant or a 3-staged surgery.  My husband and I felt as though our entire world had shattered before our eyes.

I remember sitting on the hospital bed asking our family doctor "what would you do if this was your child"?  His response was affirmatively, "the Norwood". Michael was transported to Columbia Presbyterian where he underwent the first of his surgeries at the age of four days old.  He had an extremely speedy recovery and was sent home within one week of surgery.

Things were not quite right and he returned to the hospital where things seemed to go from bad to worse.  His oxygen saturation plummeted at times into the 40's and after four weeks of numerous tests and catheterizations, the medical team finally concluded that he had multiple issues with his shunt which would require either an additional open heart surgery to repair the problem or have the 2nd staged surgery earlier than planned.  Dr. Quaegebeur felt confident that he could do a successful Glenn on a baby this young and so we gave our consent. My husband and I will never forget the smiles and high fives given by the medical team in the hallway outside the parent's waiting area at the conclusion of Michael's surgery. He did unbelievably well and returned home one week later.

At the age of three, Michael had his Fontan.  In addition to this surgery, the surgeon widened Michael's left pulmonary artery which appeared to be narrow.  The surgery went beautifully and the first few days of recovery seemed smooth. We were told that pleural effusions could be expected so it was no surprise when Michael did begin having them.  His were different though because they turned into pericardial effusions which required a total of five surgical procedures and two closed heart surgeries. We were losing hope. Thankfully, Michael's pediatric cardiologist felt the problem could be solved by a stent placement to open the narrow pulmonary artery even farther.  Within days of this procedure, Michael was a "new man" and was home.

UPDATE:  August 2011

Michael is truly a miracle! When we first heard the diagnosis of HLHS back in 1998 we were devastated. It was impossible at that time to picture life with Mike now. He is the picture of health and, unless we tell people about his heart or they see his scar or Medic Alert bracelet, no one has any clue about what he went through in the first 3 1/2 years of life. To give you an idea of what his typical summer day is like: a two hour tennis clinic; two hours at the beach playing "monkey in the middle," running sprints and jumping waves; pier fishing; back to the tennis court to hit around; and finally an evening swim. In a few weeks school will start up again. His typical school day: early morning club meetings; typical middle school schedule which includes physical education and playing trumpet in the band; marching band practice after school; tennis team; Boy Scouts; and church choir. For those of you who have known Mike for a while you may remember that he is CRAZY about ice hockey and dreamed of one day playing in the big leagues. Thankfully, he has redirected his athletic interests to tennis! But he is still a big NJ Devils fan.

Story by Michael's mom, Pam - New Jersey

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