GENETICS COMMUNITY
Turner Syndrome

Turner Syndrome

I went through the same thing in Feb & March 2008.  I was 18 weeks pregnant had a triple screen test and it came back that I was at high risk of carrying a baby with down syndrome. I went to a specialist to find out what I was having and to also get further testing with the triple screen results. With the ultra sound, they found a large hygroma on the back of the baby's neck, and SHE also had hydrops. I allowed them to do an amnio and it comfirmed Turner Syndrom (syndrome). I was told from that point that I would lose the baby. I was sent home and told that if she stopped moving, to get to my doctor right away, and if she continued to move for the next two weeks, they would have me back to check her heart. With that being said, I was so dissatisfied with the care I was given, I went to another doctor which gave me another untrasound, and showed the hygroma was now even larger and she was filled with fluid.  Her heart showed that she had Hypo plastic left heart syndrome, meaning the left side of her heart was smaller than the right, and I was told she was in conjestive heart failure and her heart would eventually stop.  They were surprised that she hung on for as long as she did, but I carried her till I was 22 weeks, then I had to be induced and gave birth.  She weighed 2lbs and was 11 inches long.  Almost 1/2 of her weight was fluid, and it was a very hard to have to see her in such a condition.  But we were able to spend time with her, have a proper burial and so forth, which helped some.  I'ts  still to understand why something like this had to happen.  I have a four year old daughter that I had in previous relationship, which she is fine, and I never saw this coming.  I'm not sure if the worry will ever go away, but you need to try and focus on the positives in your life and go from there day by day.  I'm now trying to get pregnant again, it hasn't happened yet, but I'm so scared something like this will happen again.  But I try and remember that god won't give you more than you can handle.  I don't know if this is true, but I sure do try to believe it.  God bless you, and I will pray for all of you out there that have been through the same thing.


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