Turners syndrome

[Babymomma2]

Hi lovely ladies,
New to mumsnet but hoping someone may be able to offer some guidance and real life experience of TS.
Our baby girl was recently diagnosed with Ts after the 12 week ultrasound showed increased thickening in the neck (9mm) cystic hygroma and hydrops. I was sent for the cvs that has now revealed TS, although we are waiting for the final results. I’m now 15+1 and desperately trying to gather as much information as poss to see what we could prospectively be facing. Further scans at 14 weeks showed that the hygroma has grown with baby and the fluid or adaema is under babies skin. TEh doctors have been very frank and told us we have a very high risk of losing such a poorly baby but my head is just in a spin. We are already blessed with 2 healthy children and I’m so worried about the effect having such a poorly will have on them. My husband won’t even discuss the prospect of termination at the moment but although my heart tells me that Mother Nature will step in if she needs to my head can’t help but wonder to the thought of terminating the pregnancy instead of prolonging the heartache. Can anyone share experiences they’ve had both positive and negative so hopefully we can start to make sense of all of this!

[NK346f2849X127d8bca260]

Really sorry to hear about your baby, I know two people who have experienced TS, one chose to terminate because the baby had serious heart and kidney issues and the other baby had a sub type of TS that wasn’t picked up during pregnancy as her symptoms are less severe.
Has the hospital given you any support such as a specialist midwife?

[Babymomma2]

Yes they’ve been amazing but as much as theyve given info it’s hard to relate it to real life. They’ve told us that at 20 weeks they will do a more in depth scan and an echo to see if the heart is functioning ok. It just seems such a long time to wait. I had my first scan an 9+2 as I’d worked my dates out wrong and they queried the systic hygroma then. Did your friend who didn’t know about the TS go on to have a healthy baby? Has she has any issues so far? Thankyou for your help

[NK346f2849X127d8bca260]

I have messaged you.

[ElyElyOy]

I know adult women with turners, they have jobs, got married and had children (with IVF). I know there can be other associated issues which may affect outcomes, but some people don’t even know they have it until they are toddlers due to how they are affected. Have they appointed a specialist midwife or counsellor?

[123whatsmyusername]

Although I can’t help with Turner’s Syndrone, I have been in the awful position you’re in and had to terminate a pregnancy at 19 weeks earlier on this year for medical reasons.
I’m happy to answer why questions you might have about that aspect.

[IfyouseeRitaMoreno]

My friend has TS. She is in her 40s and got married last year. She works, lives a happy life but yes, she does have a lot of health issues and spent a lot of life in hospital.

It’s a pretty serious condition. My understanding is that she has X0 instead of XX and as you can imagine that leads to all kinds of difficulties.

Having said that she has a positive outlook on life and doesn’t sweat the small stuff.

Whatever you decide to do will be the right decision because it’s not one of those things that is black and white.

[Woofsaidtheladybird]

Please do contact the Turner Syndrome Support Society - they are fantastically supportive and can offer you the support and advice you need. I have cared for 100s of girls with TS and always point the family in the direction of the support group x

[Babymomma2]

Thankyou everyone, I’m really trying to be positive and see what happens but as my pregnancy progresses it’s becoming harder. I don’t want to terminate my pregnancy but honestly I feel in my heart that Mother Nature will step in. Il keep you all posted on progress. Thanks again x

[Woofsaidtheladybird]

Hello OP
Just wondering how you're doing?
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