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Jack
DOB: 09/01/04 DiGeorge Syndrome Parents Tammy, NJ,
USA It all started when I was 19 weeks pregnant. I started having contractions and was immediately put on bed rest. Since Jack was my fourth pregnancy with early labor they immediately sent me to a high risk fetal medicine doctor. During an ultrasound they discovered what appeared to be a hole in the bottom of Jack's heart. I was then asked to see a pediatric cardiologist who perform a fetal echocardiogram where they found that Jack had Tetralogy of Fallot. I was devastated but the doctor told me this is a "fixable" defect. She also informed me that about 5% of children with this defect have "DiGeorge Syndrome" My mind was spinning...what is this syndrome? I am only 31 years old. It was a rough road for the next 17 weeks but I never gave up on the hope of Jack's health. Jack was born on September 1, 2004. He was not a blue baby but in fact was pink. He was in the NICU for 6 days when they were going to allow us to take him home however the night before he started to drop his oxygen saturation. Jack was also born with a low calcium level which prompted them to perform a genetic evaluation which turned up a micro deletion on the 22nd chromosome. It was hard to find hopeful information about this defect. Jack was taking a turn for the worse and when he was 12 days old he was rushed to Columbia Presbyterian Hospital in New York. The next day Dr. Mosca performed the delicate surgery to repair our son's broken heart. It was a success. Jack came home a day before he turned 6 weeks old. We are very fortunate. It sounds like an easy operation but it wasn't, I truly have not dealt with all the trauma I experienced and it is too painful to type. After numerous doctors evaluating Jack they are not sure he has the "syndrome", he definitely has the deletion however he is on the mild side which we are truly thankful for. The only lingering effect he has is low muscle tone which his physical therapist is working on, he is truly making progress. I want to tell all parents out there to never give up hope, God truly hears your prayers. We are truly blessed with a happy and healthy little baby boy. Tammy
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Chromosome 22 Central, c/o Stephanie St-Pierre, 237 Kent Avenue, Timmins,
Ontario, Canada P4N 3C2 tel/fax: (705) 268-3099, EMAIL: steph.stpierre@gmail.com
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US Head Office - for US donations: Chromosome 22 Central, c/o Murney
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