Turners Syndrome

Sara - posted on 08/28/2013 ( 3 moms have responded )

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Hello, my name is Sara. I'm 20 and pregnant with my first. To make a devastating story short, I went in for my 20 week scan excited as ever to find out if my baby was a boy or a girl. Find out that my baby had many things wrong with her. She had her back turned so doctors werent able to determine the sex. I was told that she has fluid all over her body, in her legs arms around her neck back of her head in her heart and lungs. As if that was devastating enough I was told that she's too small, and the back of her brain didn't develop. So I had an amneiosis done that sane day to get the quickest results I could. The results came back as turners syndrome. They told me she is not going to make it, and gave me the choice of terminating. I have decided to carry her and let God handle the rest. I know he wouldn't let her suffer and I also know he has a plan for me and this little girl. I am now 23 almost 24 weeks and I check her heartbeat everyday. My soldier is still fighting and she has a strong heartbeat. I cry tears of joy when I feel her moving which is rare. I'm wondering if anybody else has similair stories to mine and if so how did the pregnacy turn out.? I'm hopeing for success stories but I know everybodies stories are diffrent. Its a lot to cooe with being a single mom but I'm keeping faith and praying everyday.! Please post your comments looking for miracle stories as well for support. God bless

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Jessica - posted on 08/29/2013

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One of my closest friends has a 7th graders who has turners. They also know another couple with a turners child who are by and large doing very well considering. My friends child has to take growth hormone shots regularly, as Turners affects the pituary gland hormones, which control growth. Without them, she would be a "pituary dwarf" (technical term, if you'd like to google it.) Pituary dwarfism used to be very common for a variety of reasons in the past but with modern medicine it is now nearly unheard of in developed countries. Women are typically born with a XX chromosome (that is, to say they have 2 X's). Turners women have only one X, therefore in a genome they are represented as XO. This basically means that my friends daughter will never have children, she is sterile.

So, they were advised to terminate also and they did not. They dropped that OB and found a more supportive one. Their daughter is now a thriving, well adjusted 7th grade child. She is not developmentally delayed in any way as far as I can tell. She plays with my 4 year old like she's a little mommy...always so sweet and caring and I adore her. I cannot recall if she had any issues with fluid while in utero and keep in mind that every individual experience is different. Turners is a chromosomal anomaly and sometimes other (separate) conditions occur in conjunction that complicate survival and development when chromosomal anomalies happen. However, in my opinion with my experiences seeing this beautiful turners girl grow - turners itself is certainly not a reason to terminate. Yes, my friends daughter will require extra and lifelong care (doctors appointments, medications, etc.), but it wasn't half as bad as the OBs suggesting termination would have had the couple believe. I do not know if some cases of turners are worse than others or anything, but honestly if I passed my friends daughter on the street, I'd have no idea that she was living with a genetic condition. There is always hope. Perhaps you can see if any OBs or peditricians (perhaps a pediatric endocrinologist?) in your area deals with Turners and can point you in the direction of families with turners children that you can connect to? Or find Turners resources online. Wishing you all the best

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Jackie - posted on 02/14/2014

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Hello all. My daughter has TS as well. She was born with it. She is 7 now. They wanted to do an amniocentesis on me but I said there was no point if there e was nothing they could do about it. She is on GH since she was two. Shes tiny, 45lbs at 3'8" but doing great. She also has Celiac disease. It's been a tough road. ADD and ODD are also something that we are learning she may have. It's good to have a circle of friends.

Jessica - posted on 08/29/2013

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I just re read you post, I missed the part about brain development originally. That is definitely different than in my friends situation. :( I do hope that you find the support you need in family, friends and outreach programs. Still wishing you the very best xo

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