Turner Syndrome Support Group

I have not been through this situation, but I will pray for you! I am so sorry for what you must be feeling, and I am going to pray for you to get through this one step at a time.
The only one who knows what is going to happen is God, not the doctors. There are many women and young girls on this forum who have overcome the odds. They are living testimony to God's power and purpose. Take each moment as it comes and I hope you find the information you are looking for.

There are many web sites that offer a lot of info regarding Turner's Syndrome.

turnersyndrome.org
kidshealth.org/parent/medical/sexu... - 29k

Also, if you google turner syndrome you will find many others. Hope this helps.

I feel for you...sending positive thoughts your way. I love what NOTW replied... great advice. Also, I'd like to add that our AFP test showed 1-19 chance that our baby was Trisomy 18 which are babies that do not make it term 100% of time, then the ultrasound determined our baby girl was okay. We never did the amnio to find out for sure, we couldn't take anymore. So our baby girl was born and we thought our prayers had been answered. However, over a series of questions with her health, mostly not growing, we finally discovered at 14 months that she had Turners. I often wonder, how I would have felt if I had gotten that amnio and known while I was pregnant? I know I would have wondered the outcome as you are doing... I think the research does say 99% live to term.... I would hold on to that 1 % and know that there are so many things that doctors can fix with Turners, even the heart problems. Every case is so different so I don't know the severity of your baby. I would encourage you to do more research... from what we discovered, if you are going to have have a chromosome problem, Turners is the one to have. There are so many things that can easily be fixed.. and for the most part, most of the girls live normal lives.
Hang in there!

All of us here are living proof that most girls with Turners Syndrome turn out just fine. As sset said, most of the health problems can be fixed and the girls live pretty normal lives. So don't give up hope. The best thing you can do for yourself is research and learn as much as you can about it so you'll have an idea of what to expect and prepare yourself for whatever happens. I'm sure everything will be just fine.

I can't imagine how you must be feeling right now. I am a mom of a 14 month old who has TS and we found out one month ago. She had heart surgery to correct a coarctation at 6 months that did not show up until her 4 month check up. I am not sure how severe your baby's heart condition is - but I do know that prayer and finding a great pediatric cardiologist is your best bet. During my pregnancy my AFP also came back positive for Trisomy 18 - like sset's did. It is so scary and heartbreaking to know that you can't change the diagnosis, or just put a band-aid and kiss it like most other "boo boos" that mommy's have to deal with. I will pray for you and your baby. I also want to invite you to our Turner Moms group here on DailyStrength. Good luck and I pray that you can find the right doctors, information, and health care for you and your baby.

I cannot give you any positive advice. My daughter was dx when I was 19 weeks and had heart defects as well as a severe cystic hygroma and sadly she was stillborn at 24 weeks. Please feel free to message me and I will help you in ANY way I can. I know what you are facing and how scary this is. I am sorry and again, please let me know if you want to talk. Good luck...

I want to thank everyone for their uplifting comments. It is so hard to stay positive not knowing what is going to happen but it does help knowing there are others who have had positive outcomes. I know God will decide what is best but it doesn't make it any easier. God doesn't make mistakes...I just have to believe there is a reason for all the pain.

I had ivf done, and at 9 weeks they still hadnt found a heartbeat, it ended up being a blighted ovum, the dr. told me and i also read, that it is a way of the body telling us something will be complicated if the fetus would have developed. im so sorry but im a TS survivor also, so u never know if ur little one is a fighter like i was. :)

I want to thank everyone who has been praying and giving support and I'm sorry I have not posted sooner. I found out last week my baby has died and up to this point I have not been able to talk about it without breaking down. Thank you all for being there and giving advice and for your prayers. I know God has listened and I know he will help me through this. Thank you.

Oh I'm so sorry! I don't even know what to else to say.