Twin-twin transfusion syndrome

[fufulina]

Hello - have posted this on the pregnancy board as well. Just been for my 12 week scan and I found out I'm carrying identical twins (one placenta, two amniotic sacs).

One of the twins was significantly smaller than the other and we had a chat with the consultant about Twin-twin transfusion syndrome.

It's all come as a bit of a shock (twins and then potential for huge complications) and I wondered if anyone could talk to me about:

1. TTTS - and their experience
2. Discordant size of twins at 12 weeks which was actually nothing sinister

Thanks very much in advance

Hello fufulina, congratulations on your pregnancy. I had a similar experience, at my 12-week scan for my identical twins there was a significant size difference and also a collection of fluid on the back of smaller twin's neck which the doctors thought could be an indication that TTTS was more likely to develop. I went for scans what felt like every five minutes throughout my pregnancy to keep an eye on things and nothing ever did develop. In the end, my twins were born at 32 weeks for unexplained reasons, with a significant weight difference (3lbs 11 and 4 lbs 12) that the doctors said was just one of those things, that the placenta and its nourishment can never be split 50/50. No TTTS ever developed, and they are now perfectly healthy four-month-olds, so it could well turn out to be nothing, and fingers crossed it does.
Good luck.

firsttimetwins thank you so much for getting back to me. Who knew identical twins had so many additional risks?! Have slept on it and feeling much more positive about things - it was an incredible shock yesterday.

Both babies were fine on their nuchal fold test, and there didn't seem to be abnormal levels of water for either, so all we can do is sit tight and wait for the 16 week scan where they'll see if one baby is just smaller than the other - like yours, or if there are other issues.

Can I ask - am assuming your babies went into intensive care/SCBU? How long were they in for? How was that? It's odd but I'm also mourning the loss of the newborn phase - I have a 13 month old and so loved the very early days with her and am realising that if everything does go well, it will be very different and will probably involve being at hospital in the early days. Were you able to breastfeed at all?

Thanks again very much for getting back to me - your post did me the world of good.

I really don't know much about this, my twins were non id, but congratulations!

I do know two mums who had twins and TTTS syndrome and both went on to have healthy babies. I think the water was a big indicator, so the fact they are even is a very good sign.

Hi again. I can imagine it must have been a shock, I had my scan on the morning of my 30th birthday and I remember very clearly what a shock it was. I'm glad you're feeling more positive today, that's great that the nuchal fold tests were fine and the amount of fluid seems fine too.

My twins spent 4 weeks in SCBU, so arrived home 4 weeks before their due date. It was a really odd experience, but not necessarily a bad one. The hospital I was in has rooms for mothers with babies in SCBU, so I was able to stay in the hospital to be near them. I wasn't able to spend as much time with them as I would have at home, obviously, but on the other hand I did get the chance to recover properly from my section, and myself and DP were able to build up a lot of confidence with the girls before they came home. I tried breastfeeding in the hospital and couldn't get it to work, I think mainly because I was too tense. The hospital did provide an electric pump though and I pumped 6 times a day, though my milk didn't properly come in till we got home.

When I got home I breastfed both for a while but the smaller twin couldn't do it very well, so I fed her expressed milk and breastfed the other twin for about 2 months, ended up switching to purely expressed breast milk for both and am now moving over to formula. However, I'm pretty sure this was due to my own lack of skill/confidence with the babies, and if you've already breastfed one I reckon it'll be much easier (I never managed to tandem feed and in the early days my main problem was having one baby cry while I fed the other, but I think tandem feeding will be easier if you actually know how to feed). I do of course feel enormously inadequate and guilty about my inability to feed, but I'm beginning to think that if it wasn't breastfeeding, I'd be feeling inadequate and guilty about something else!

As these are my first babies, I have no idea what I missed out on, but I do feel I had my full quota of the newborn stage because they seemed so tiny when we got home even though they'd been in hospital for so long. I think they've probably caught up with other babies by now, but they did seem premature rather than just newborn for a few weeks, if you see what I mean.

Fingers firmly crossed for your 16-week scan and in the meantime feel free to ask anything else that occurs to you on the offchance that it came up for me as well.

Breastfeeding full term twins is not so much of a problem, onviously very busy!!, but ok.

Breastfeeding early twins is a bit more complicated as they have to develop a suck reflex, and scbu tends to like to get you out asap so will pressure a lot of Mums to bottle feed as early babies find this easier. However I know sveral mums who have managed to exclusively breastfeed twins that were early. It can be done with a lot of patience and a sympathetic neo-natal team. Cup feeding instead of bottles and loads fo skin-to-skin is the key i think!

Mine are id and were about 1lb different at birth, 5lb12 and 6lb10, didn't pick anything up at all the scans. I went to 38+6 before being induced and ending with an emergency c-section.

firsttimetwins -am mortified, I never responded to your second post - thank you very much indeed. I'm still pregnant, which based on the consultant's chat at the 12 week scan is a miracle - and have the 16 week scan a week on Tuesday.

And starting to show which is odd - very early, I think but not sure if that's the crunchies I'm devouring to give me energy!

Anyway - thank you very much again.