Our little boy passed away to this terrible disease on oct 12, 2014...its been 5 weeks since our boy went to heaven and we miss him so very much. Our son scored 9.9 on his apagar he was premature born at 36 weeks + 5 pounds and 4 oz and 18 inches, he didnt need any support and was able to stay in the room with us. He did so well, breastfed baby without problems, he appeared to be healthy, when he was about 9 months 1/2 he caught a fever and never got better after the 3rd visit to the er he was admitted, while doing an eco cardiogram they noticed his right side of the heart was very large and his pressure going to the lungs were very high 110 he was diagnosed with pulmonary hypertension, his feet and hands started to swell :( he had an heart cauterization and since then our baby never woke up. They intubated jaden and his heart didnt handle it well, his blood pressures were affected and he ended up needed to go on ECMO the most intense life support, by then they did a genetic test because jades lab all were normal yet his fever was still there...and they didnt know why, our son fought to live for almost 6 weeks and not once we left his side. We found out our son had multiple mitochondrial syndrome 1 which is a type of mito that usually the babies wont be able to make it to their 2nd birthday, its heart breaking to know that there is no cure and no treatment... we want to help raise awareness... we are carriers of this disease and that how our son ended up having it...even though we had genetics test done in over 100 disease, mitochondrial disease was not included in that panel. I dont understand how it wasnt included...this is so terrible. our heart goes out to everyone that is dealing with this terrible disease. together we can raise awareness. god bless everyone!
Posted on: Thu, 20 Nov 2014 19:00:53 +0000
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