twin to twin transfusion syndrome-anyone experienced this??

[twinnies26]

I went for a routine check up yesterday and found that i have severe TTTS. I received emergency lasery surgery and this morning there were still two heartbeats thank god. We have been told, however, that nothing is certain now with the pregnancy and will be a miracle if two or even one of the babies survive. Is there anyone out there who has experienced this?anyone who has advise? we know noone who has identical twins yet alone twins with TTTS.

Any advise info would be so helpful from a personal point of view. We are up to date with all the medical information.

Twinnies26

Some-one posted on here yesterday about the same thing, x

heres the link;

www.mumsnet.com/Talk/pregnancy/1191827-Twin-Twin-Transfusion-Syndrome

Twinnies, high, I am three weeks post laser now and doing well - the above thread has more info.

To tell you it would be a miracle if either of them survive seems insensitive and incorrect. We were told 33% both survive, 33% one and 33% neither. That is 66% that at least one will survive. I really think staying positive is important, and resting, I did nothing for the first week (except stress about it!), and am still taking it easy.

Mine has severe - literally a case of we need to do the surgery now or they won't make it - so there is hope.

If you any specific questions feel free to ask, also TAMBA has loads of info and positive stories.

Big hugs x

Please excuse the spelling - using phone!

Hi silver angel- that is great to know congratulations! i just need to hear some stories like yours as all the surgeons had such forlorn expressions on their faces. I guess now we are playing a waiting game until the next scan in 5days time. We found out today that they are two little girls-we had to ask as we felt we were so close to losing them. They gave me the 33% talk too and we were also labled 'severe' so comforting to know you had the same experience and all is ok!

Like you i intend to rest up- I'm actually finished work in a week for the summer and i guess really that's effective from today as i won't be going back for a week at least!

Are you taking those protein shakes?Does that help?

Thank you! let me know how things go with you all :)
Twinnies26

I havent been taking the protein shakes, cant really stomach them but I have been eating really well (take that to mean A LOT!).

The worst thing for me through the whole thing was the waiting - when is your next scan?

Keeping everything corssed for you:)

we have 5 days to wait, they were going to take us back in 2 but then decided things looked ok to try 5. so fingers crossed! :)

Sorry Twinnies - I've only just found this thread but have posted on this one www.mumsnet.com/Talk/pregnancy/1191827-Twin-Twin-Transfusion-Syndrome?msgid=25787599#25787599 which I see you are on as well.

Re: protein intake. I spoke to my consultant about this and they said that increased protein is helpful for boosting healing but not as important as making sure your iron intake is high as the quality of the blood the babies receive is really important.

We also found out the sex of our babies the day that we had the surgery - we hadn't wanted to know but it felt like the right time. They say that girls are feistier than boys and are more resillient (sp?) so that is a good thing for you.

Thinking of you x x

Sorry, no experience of this but I watched Emergency in the Womb (still on 4od) on this subject. Worth watching.