Twin to twin transfusion syndrome - laser surgery etc

Hi All,

So at 2o weeks pregnant with identical twin girls - I have developed Twin to Twin Transfusion Syndrome:(

While beside myself worried - I feel strangely calm. I have an amazing MFM as my Dr and I have full trust in him and his team.

The current situation is that bigger twin has more fluid than smaller twin who has much less, although this has improved slightly from last weeks scan when little twin had even less fluid than she has this week.

My MFM is going to do laser surgery between weeks 22 and 23 (apparently this is the optimum time for this kind of procedure) - so now I feel as though I am just in a waiting game... I am measuring 30 weeks roughly - so ten weeks ahead, due to the additional fluid. Post laser surgery some fluid may be drained.

I guess I was just wondering if anyone else in here has had to deal with TTTS, or had any experience with laser surgery? If you have I was wondering how things turned out and how far you managed to get with your pregnancy before delivery.

The google stats are pretty scary! At no point has my MFM discussed losing one or both babies, although obviously this is possible with TTTS so I'm staying away from google for now:) Thanks for listening - I do feel better for sharing and I would love to hear of any personal experiences, knowledge or experience you may have of this kind of situation.

X

No experiences, just wanted to send some positive vibes and you and your girls will be in my thoughts.

One of my closest friends has gone through this, but it started much earlier in her pregnancy. Sadly after her lazer surgery the situation reoccurred and she had to have it done again. The good news is that there are some wonderful doctors who are becoming very experienced in this type of surgery and their outcomes are good. My advice is to write down any and all questions you may have, and to check out TTTS support groups of which there are at least one or two on facebook. I will be thinking of you and your girls.

*hugs*
no experience, im not even sure what the procedure entails but im sure it isnt good...
let us know if there is anything we can do.
thinking of you and your little girls

Oh honey :cry: I'm sorry to hear this news. I really don't have any advice, just sending you hugs. I started to show signs of it towards the end of my pregnancy - at around 33 weeks but the girls solved the problem by arriving at 35wk2days. At that stage, my only option would of been delivery so I don't have any knowledge of laser surgery etc. Have you had a look at the AMBA website? Its a multiple birth site that has a forum and you may get some stories or answers from there? You have to post 5 times I think before you can access the whole site but that's pretty easy to do.

Hard to believe but today I am 30w + 3 days! I still have TTTS but its stable in the sense that the twins are shunting. Fluid and blood between one another, but neither baby is dangerously low on amniotic fluid. The bigger baby is measuring approximately 110grams ahead of the smaller baby and my DR thinks they will need to be delivered around 34 weeks.

However, I am hoping to get to 36 weeks:) I am still at work and we will be settling on our new house Wednesday this week and moving in on Wednesay. I just feel really lucky to have avoided needing laser surgery and that both babies are still alive and growing.

I wanted to update the thread for anyone who may be dealing with TTTS in the future. It's been hard having 2 - 3 scans per week and so many Dr's appointments - but I have the most amazing medical team you could ask for and feel incredibly lucky, i trust them explicitly.
X

Hi TTL,
One of my friends had TTT with her boys many years ago. I don't even remember her being offered surgery to correct it. (it might not have been properly developed then). Her boys are now 10years old :) They were born via emergency c-section at 32 weeks (because of the TTT)
Now most people would not even know they were prem. :)

FX you make it to 36weeks or at least 34+.

That's wonderful news, thanks for the update :-)

Thanks Chrispe and Traveller! Yes I am really really hoping for beyond 34 weeks... I am a bit scared of them being very early (anything before 34 weeks is very early in my brain - and no matter how hard I try to be logical about this, I can't seem to shift my fear).

My two boys were both born at 39 weeks by cs - and they were both only 6 pounders, so in the back of my mind I guess I just think that I have 'little' babies anyway - and I want them to be as big as possible before they arrive. I'm scared of NICU time - so I am just trying to get as far as I can without risking the wellbeing of either baby.

This twin pregnancy thing is harder than I ever expected - and I feel like I'm one of the lucky ones:)

X

:hug: Good luck with the next few weeks :)

Thirdtimelucky- great news, thank for the update. Glad to hear your little ones are going strong. :)
Don't be too scared of babies being born less than 34wks, we had 32 weeks twins at my hospital a few weeks ago who are doing brilliantly, only one was on breathing support for a few days but they didn't have to go to a bigger hospital ever (only been in SCN not NICU). So obviously the longer they are in the better but its not always super scary. Is there any way you can finish up work and take it easy for the next few weeks???

Well done on growing those babies this far, you are a legend!

Hey Saffy,

Thank you so much for your reassuring words! I wish you were a midwife in Perth! :)

I just noticed you are almost 20 weeks already! How fast has that gone!!! :) It feels like yesterday you got your bfp, I'm still just as excited for you.

Thank you so much for letting me know about your recent twins only having to go to the SCN - that is so what I am hoping for! I don't think I have really prepared myself for them having to stay in hospital when I come home even! It hasn't properly processed that I will likely be coming home without them, let alone that they won't be rooming in with me from when they are born - so it's great to hear that it isn't always super scary!

I probably should have stopped working weeks ago! I'm hopeless. I'm only at work still because I want to be - I'm the HR Manager so I should know better:) My work is very understanding and I am not pushing myself with hours etc anymore, so I reckon this week might be it! Having said that I have a feeling at my Dr's apt tomorrow he may put his foot down and make me stop straight away.

My MIL is coming on Wednesday to "help select furniture for our new house" - so it mint be the perfect time to go to hospital for a few days bed rest:)

It's so great to hear from you and I really appreciate your support! Are you keeping mini daddy's gender a surprise?

X

That was meant to say - mini saffy's NOT mini daddy's... Hha

Thirdtimelucky - I am so glad you have not needed surgery. I hope those little girls stay put for another 4 to 6 weeks at least for you. It must be really scary for you and your Dh. Having a supportive medical team really helps though I'm sure. Take care and rest as much as you can in the middle of your moving house and work!