Twin to twin transfusion syndrome

caroline m · Post by **caroline m** » Fri May 13, 2005 7:27 am

Hello everyone, just seeing if there is anyone here with identical twins where they are sufferig TTTS?

I am now 16 weeks pregnant with triplets ( a set of identical twins & a singleton) and went for a scan yesterday & was told we had severe TTTS.

I am utterly devastated. There is a big risk we could lose them all. The consultant wants to operate with a laser to try and split the placenta - the only hope, even though risky of saving the twins but couldn't yesterday as the other baby's placenta is in the way. He is going to try next Thursday ( if they are still alive then) in the hope that there will be more room then.

I just feel that after the ups & downs & traumas of IVF & the sheer joy of finally being pregnant & then finding there are 3 of them & getting through the worrying 1st trimester I'm not sure how I can cope with this.

Has anyone else lived through TTTS?

Thanks

Caroline

Sand · Post by **Sand** » Fri May 13, 2005 1:28 pm

Caroline .. I hadn't heard of TTTS until I read your post. I've had a quick look on the Intranet as to what it's all about, and I can imagine that you are both beside yourselves with worry.

I'm sure you've had a look there too ... There seems to be a lot of info, but not that many boards - or boards that are current.

www.twin2twin.org shares success stories, as does an australian site www.twin-twin.org On this autralian site, you also have the option to e-mail folk who have been through it. Some of the links aren't current, but some do work.

The main thing Caroline, is that THERE ARE success stories out there, so don't give up. I hope your appointment on Thursday goes well.

Sandra x

Alette · Post by **Alette** » Fri May 13, 2005 5:56 pm

Oh Caroline... what a nightmare happens to you, your DH and your triplets...

I also never heard of this syndrom.. I will keep my fingers crossed...

big hug
Alette

Jules R · Post by **Jules R** » Fri May 13, 2005 7:30 pm

Caroline,

I'm so sorry to hear that you've had this very frightening news. I'd really recommend posting on the Advice and Support forum at www.twinsclub.co.uk because there are people on there who've been through TTTS and can give you advice. There's also a message board on the TAMBA site but the twinsclub site has far more posters.

Thinking of you.

Jules

caroline m · Post by **caroline m** » Sat May 14, 2005 6:45 am

Thanks for you messages & taking time to look up sites for me - so kind.

Have spent 24 hours reading up - thank goodness for the internet & feel a bit calmer. Have found a great US site & I am concentrating on only the positive stories.

Thanks

Cx

hlloyd · Post by **hlloyd** » Sat May 14, 2005 10:45 pm

Oh Caroline, you poor thing. As if you don't have enough to worry about. Like you have said, there are lots of TTTS success stories out there and the laser surgery appears to provide really good outcomes for both twins. It is great that you have a doctor who is able to perform the surgery as they seem to be few and far between. It sounds like you are in very good hands. I wish you and the babies well for the following months and I really hope they are able to proceed with the surgery in the coming week. Hopefully, the surgery will also be able to provide you with some much needed peace of mind.

Take care
Heather

DebraP · Post by **DebraP** » Mon May 16, 2005 8:13 am

Caroline, my heart goes out to you. Your consultant sounds positive about the surgery so we can only hope that Thursday does show the space he needs to operate.

I had a quick look at support sites and there seem to others who have been through this nightmare successfully.

I'll be watching for your news.
hugs
Debra

SQUEW · Post by **SQUEW** » Tue May 17, 2005 8:42 am

Hi Caroline

I have just seen your news as I have been away. You must be so worried, and it never seems fair after everything we have to go through to get pregnant in the first place. I have a few books which I bought on twins and from what I can read, like the others say, the laser surgery seems the best option and is successful, it also seems that the earlier it is diagnosed the better.
I am praying that all goes well on Thursday for you, and in the meantime a huge huge hug from me.
Take care
Lots of love
Sue xxxxxx

hlloyd · Post by **hlloyd** » Wed May 18, 2005 8:01 am

Hi Caroline

Just a quick note to wish you luck for today. I hope the babies are in a better position and your Doctor is able to go ahead with the surgery.

My prayers are with you and your lovely babies.
Heather

kappy · Post by **kappy** » Wed May 18, 2005 3:36 pm

Hi Caroline,
What a terribly frightening time for you and DH. My heart goes out to both of you. Thank goodness you have a doctor that is able to do the surgery so quickly. Hopefully the babies will cooperate tomorrow and all of you will be home safe and healthy soon.

Please know that you have many people thinking about and praying for you all.

Kelly

minnow · Post by **minnow** » Thu May 19, 2005 11:42 am

caroline, am thinking of you all and hoping that today is a success. fingers are v v v v tightly crossed for you.

minnow

DebraP · Post by **DebraP** » Thu May 19, 2005 1:39 pm

Hi Caroline, you and the babies have been on my mind today. How did the apt. go?

Debra

NickiMark · Post by **NickiMark** » Thu May 19, 2005 2:23 pm

Hello Caroline,
Ive been following your story just wondered how things are now. This is terrable news after the ordeal of treatment...
I hope that u can find the info you need and that the 3 babes are all ok.

x x x

caroline m · Post by **caroline m** » Thu May 19, 2005 6:21 pm

Thanks to everyone for their messages, prayers & thoughts.

We are just back from the hospital. I am pleased to say that Professor Nicholaides ( at Kings) managed to do the operation & successfully separated the placenta. It was very trickly but the guy is an absolute genius, we are so incredibly lucky to have such amazing talent available to us. There were 16 doctors in the room watching!

It is early days but thankfully all 3 ( 2 girls & 1 boy apparently!) survived the procedure. The next 7 days are crucial, to see that they twins have survived the shock & adapted to their new blood supplies & that these are adequate for them & also that I don't miscarry, so going to be a long week, but at least we are all survived this first hurdle.

Caroline x

DebraP · Post by **DebraP** » Thu May 19, 2005 6:26 pm

Wow Caroline! thank you for posting so quickly and such reassuring news too. I'm thrilled that the operation went well, I don't need to ask you to take the next week as gently as possible do I?

My thoughts will be with you.
Debra

Twin to twin transfusion syndrome

Twin to twin transfusion syndrome

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