I am so sorry to hear about your daughter and all that she has been thru in her life. As a mother myself I know that spending years watching your child suffer is agonizing. I also know that not being able to watch your child grow up literally rips you in two. That is my life, I will spend the rest of my life missing everything. I will never get the opportunity to see my daughter grow up, go to kindergarten or get married. She's gone forever. The mission of the March of Dimes is to make sure that no parent ever has to experience that pain ever again. That each and every child is born full term and healthy.
When your child is suffering it is very difficult not to want to find the answer by any means necessary. After my daughter died I wanted to blame anyone and everyone including myself. So many of us on here are raising very ill children or are wishing that we were. The March of Dimes has helped us cope with our loss and deal with the day to day challenges of raising our children with special needs. Many of us owe our sanity to the March of Dimes. I have been in some very dark places and SHARE has helped pull me from them. We all sympathize with you more than you realize, I hope that you continue to update about your daughters condition and how she is feelings after surgery. I will pray that she begins to feel better and will find a doctor that can help her soon.