Edwards syndrome

Anonymous

Edwards syndrome

I've been told my baby has Edwards syndrome. Currently 12 weeks pregnant, planned baby. I'm getting the "harmony" blood test to confirm this and then make my decision from there. There is 6.7mm of fluid behind the neck although it is detached? And fluid on the lungs.
I just want to hear others stories from this, the positive and the negative. I'm not coping, it hurts to blink I've cried so much. Just any insight you can give me, I don't understand why this happened. In young, healthy, no family history, my partners the same.

Posted in:  Life Lessons, Relationships & Marriage, Mental Health, Self Care, Loss & Grief, Sisterhood Stories, Parenthood Guilt, Health & Wellbeing, Behaviour, Pregnancy, Baby & Toddler

3 Replies

Anonymous

I met a lady in hospital years ago when my son was having an operation, she had a little baby girl. She was told baby had Edwards and would only live for a short time or Down's syndrome. Anyway, her daughter was born with neither but a severe hair lip (she was in for her daughter to have mouth/lip surgery). Needless to say I have never seen a more adoring and loving mother, she was soooo happy her daughter had such a minor condition compared to what they diagnosed. I would seek a few opinions.

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Anonymous

I hope your doctor explained to you that the harmony blood test won't confirm or deny- it is not diagnostic. The only diagnostic tests are the amino or a CVS. If harmony comes back with high chances again you will still need either one of these diagnostic tests to confirm or deny. If harmony comes back low chances then you have one test saying high chance, one saying low chance. That's going to be VeRY confusing! But may be enough for you and your partner to not want further testing.

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Anonymous

Also, as easy as it is to say, try not to stress. Again, unless you have had an amino or CVS they can't tell your your baby HAS Edwards syndrome. They can only say based on their current test results they would give baby a HIGH CHANCE of having Edwards syndrome. It's not confirmed yet so try to remain calm until you know one way or another.

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