Elizabeth - posted on 05/02/2009 ( 21 moms have responded )
im new to Circle of Moms.. I was looking to see if there were any groups about Turner's Syndrome because I am always looking for success stories.. I gave birth to a VERY healthy 9lb 5 oz baby girl April of 2008.. now I'm 17 weeks pregnant with a little girl who has Turner Syndrome. I found out through a CVS I had done at 13 weeks due to an abnormal first trimester screening,. My little girl has a large cystic hygroma, fetal hydrops, a hole in her stomach and now a swollen head. I am having a fetal echocardiogram done on May 13th to find out if there are heart defects. Pretty much every doctor I've seen has tried to suggest terminating (in their own lovely way) and my husband and I could not bring ourselves to do that. They say her condition is so severe that they feel she will have heart failure before she makes it to term, and if she did make it to term, she would need complete reconstructive surgery to LOOK remotely normal, series of heart surgeries and who knows what else. We have not heard her heartbeat yet, we have only seen the flicker of it on the sono screen, and seeing her little legs moving around is what we use to determine if she is still alive. Being insulin dependant since I was 19 years old, my pregnanies are high risk to begin with.. so this is just making things more complicated. I am praying for a miracle, but I keep being told that the hydrops along with turner syndrome leave her with less than a 1% chance to make it. the hydrops are covering her entire body...
I am wondering if there's anyone on this site who has successfully given birth to a Turner Syndrome baby who was showing complications in utero... or if anyone has had similar complications with a baby during pregnany, and how you were able to handle it.