REAGANRetrun to 22q Stories
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After a 16-hour labor I was told that I would have to have an emergency C-section as Reagen’s heart rate was dropping. He was born with the cord around his neck. Right from the start we knew something wasn’t right; he wouldn’t stop shaking and he kept turning blue, which we were told by the midwife that it was normal for a C-section baby. Thirteen hours after he was born Reagen stopped breathing and was resuscitated, he then had non stop blood tests which then showed up that he had digeorge syndrome and that he would most likely not make his first birthday. His symptoms ranged from low immune system, low calicum, magnesium, phosphates and mineral levels, low iron levels, pulmanry artery stinosis, pda, tappered fingers, shortened soft pallet, nasal regergitation, reflux, low muscle tone, calcium seizures, two brain conditions, poor feeding, inability to regulate body temperature, inabilty to clear wind pipe, asymetrical face… the list went on. For the first two weeks of his life he was on heart monitors, suction and oxygen, blood test every 2 days, he kept on desaturating and while all this was happening there was absolutely nothing that my husband and I could do…. Reagen reached his first birthday after having endured three operations on his tonsils and ears to try and stop his airway from being blocked. He is now nearly 4 and has had a perferated ear drum since he was 10 days old. He averages about 2-3 surgeries a year and still doesn’t talk, he is developmentally that of a 12 month old and still gets every virus or infection that goes around and spends most of his life on antibiotics… BUT he is one of the most effectionate little boys I know, always giving his sisters cuddles and kisses and both Mummy and Daddy lots of cuddles and kisses!!!! My little angel boy!!!!!