Almost nine years ago, after so many years of infertility treatment, my husband and I finally got the news we were expecting, only to find out after my amnio that our daughter had a complete trisomy 13.  We were told she would not survive until term, that I should terminate my pregnancy.  My OB , the geneticist, the perinatologist, my son's pediatrician, everyone I spoke to said I had to terminate my pregnancy, and at 18 weeks it had to be now.  I was adamant I could not live with the decision, but my husband had listened to all the advice and agreed that it was for the best and pushed hard for me to terminate.  We were told she would not live, that she would suffer unbearably if she made it to term, and I was being selfish to want to keep her, so two weeks later, I agreed.

I understand, the medical community looks at these children as lost causes.  It is easy to see things in black and white in the world of medicine.  But I valued that child, and I was not heard.  I was ganged up on, relentlessly pressured, and I was an emotional, hormonal, and physical wreck.  And with literarily only days to make a choice, it was a nightmare.  Medicine says, this child will not live long, or may not make it to term why should you carry it?  I said, because I am her mother.  But that is not understood.  We want perfect.  When I called my son's pediatrician, she said to me, "You have to understand, the child you wanted doesn't exist.  This child will not live long.  Think about what that will do to your family, what that will put them through, how your son will deal with that."  What she didn't understand was, my son needed a mother who was not emotional basket case, and terminating the pregnancy sent me right over the edge for a while.  It took me about two years to get back on my feet - partially because I had another baby to care for...A boat load of counseling later, I at least got over the fear that she would die any second.  Doctors need to know, choice means choice., and it is a choice I cannot live with to this day.  

I look at these pictures, read your stories and my heart aches.  Since I had a D&E, I never even got to see or hold my daughter - Serena Brianne, we named her.  There is not a day that
goes by that I do not think of her or feel she was sent to me for a reason, and feel guilty for giving up on her - because she didn't give up.
We have since been blessed with another little girl.  She is perfect in every way, but she cannot replace the daughter I have lost, or ease the pain that doesn't seem to ever lessen.
Your message is sooo important.  Had I read these things nine years ago, I would have never listened to anything other than my own heart.  A mother's heart always knows what is best for her child.  Maybe she would not still be with us, but that would have been her choice, not mine, not theirs.  You give hope to those who have been told there is none, and a way for them to hear
what is most important...the truth.

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.