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“…she was the most beautiful baby I had ever seen.”
Elika Rayne Duenas, Trisomy 13, 7/11/2009 – 7/22/2009
In 2009 my daughter was born 1 1/2 months premature. Being a preemie survivor myself I knew she would survive, that is until her Dr. told me they thought she had a genetic disorder. Until then I had never heard of Trisomy 13 or Trisomy babies at all so when the geneticist told me that she had an extra 13th chromosome I wasn’t sure what to think. She had two holes in her heart as well as a cleft palate and lip and she was the most beautiful baby I had ever seen. I was sure if I tried hard and prayed she would be all right. Then her Dr. informed me that one of the holes in her heart was closing. See while they were both there they equaled how her heart pumped out but once one began to close if she had not been on life support she would have died. Her Dr. told me and my husband that if she stayed alive she would be on life support and a vegetable all her life. We didn’t want this so on Friday July 22 2009 we removed life support from my beautiful baby girl. It was the hardest thing we have ever done and I miss her so very very much. After reading your site I can’t help but wonder if we did the right thing or if she could have been saved and led a more normal life than we were told.