warning sad, baby didn't make it home
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|Sat, 03-06-2010 - 9:02am|
I have a son who is two conceived from fresh cycle of IVF. My daughter conceived last June was conceived from a frozen blast. I write for your infomration and for those of you who remember me...
Originally my baby girl Lauren was diagnosed with an antibody problem that caused severe anemia and hydrops. She was treated with four intra uterine blood transfusions and was to be delivered by C section at 37 weeks. It was believed that she was well and would suffer no long term effects.
Our baby girl was born with severe complications. She was immediately intubated and placed on a ventilator. She was born with a severe rash, enlarged spleen and liver, she is deaf, she is micro cephalic (small head size indicating small and or damaged brain), malformation of her hands. Her diagnosis? CMV. The antibody was a misdiagnosis. While the blood transfusions kept her alive, they did not treat the CMV..they just maintained her life. There is no treatment for CMV.
CMV stands for cycleomegleo virus. CMV is a commonly passed virus among children and adults. It is not dangerous to the vast majority of children and adults. 90% of 45 year olds have been exposed in their lifetime. It is passed the same was as the common cold. IF a mother is exposed to the virus, the first time in her life, while she is pregnant (particularly the first trimester), the results are generally devestating to the baby. In my case, the results were as bad as they can be. We lost Lauren to CMV.
Her room does not make me sad, her personalized Christmas stocking does not make me sad, her personalized boppy pillow, does not make me sad. It did not make me sad to pump milk for a baby that I didn't bring home, or to return some of her most expensive things. What makes me sad, is that I could not protect her. That I had ultra sounds every month of my pregnancy, and that somehow nobody knew that she was suffering. That CMV is so common (look it up) and that hardly anyone has ever heard of it. It casues as many disabilities as Downs Syndrome and Trisomy, disabling one child an hour. It makes me sad that at the end of the day I feel as though I failed her before we even had a chance to know each other. Not EVERY baby exposed to CMV is as sick as Lauren was, but many many are. I read hundreds of journal articles accesing the medical LIBRARY, not just google, I talked to experts in other states and in two other countries because my NICU here could offer me no real help. In the end, conclusions were the same....hopeless.
Healthy babies do not make me sad, joyous in fact for the miracle of birth. I have a son and I attempt at this point to celebrate my blessings and not my tragedies. Some days are easier than others and I am certain that the medication is helping.