Mono-di twins and TTTS

[hetsto]

Seeking out anyone pregnant with monozygotic diamniotic twins, at risk of twin to twin transfusion syndrome (TTTS).

We recently found out we're expecting twins and that they had TTTS, and have now undergone laser surgery to sever the blood vessels they were sharing. It all seemed to go well, but obviously this is very risky, and we're going back this week to check they're both still holding on and whether the smaller twin is catching up at all.

I've read quite a bit on TTTS now and had lots of support from the hospital, so I don't want to send myself into tailspin with information-overload, but it would be great to chat to anyone else with experience of this or who is at risk. Also, just to share the nicer aspects of being pregnant with twins and lament on how enormous I am now becoming!

Hi Hetsto, how are you?

I had laser surgery at 19weeks with my MCDA twins - they're now two years old! There's some old threads you should be able to find on here when me and three other ladies were going through the same thing. We all ended up with healthy babies.

When is your next scan?

x

Hi Silverangel! Thank you for getting back to me, it's great to hear a good news story! I'll have a look at the old thread too.

I've got another scan on Thursday, so fingers crossed for then. Were you monitored fortnightly after the laser surgery? It sounds like that's what they'll be doing with me, at least to start with.

How many weeks were your twins born at? I'm 22 weeks this week and feeling huge, but also willing my little girls to grow lots more before making an appearance.

I was scanned every week for a weeks and then down to fortnightly. I finished work at around 22 weeks as my back completley gave up and I couldn't manage my commute anymore.

I had an emergency section at 31+3, and they were 3lb1oz and 3lb3oz. I had a placental abruption which may or may not have been caused by the laser but there were signs something wasnt right for a few days so they got the steroid injections in in time and the girls were absolutley fine, just small. Only one needed a bit of breathing assistance via cpap for 12hours. I'm sure that finishing work early helped them get to a fairly decent size for their gestation as I literally did nothing apart from potter around the house after I finished!

Wishing you good luck for Thursday - the waiting is by far the worst part x

Thanks Silverangel, I agree, the waiting is by far the worst bit! Somehow lots of my angst seems to lift when we get the hospital just because I know something will happen or we'll be told what's going on. It's the uncertainty that makes me the most uptight.

I'm not too sure what to do about finishing work yet; I should be able to work from home quite a bit towards the end and it's the commute that is the most exhausting to be honest as I mainly sit at my desk all day. I am usually offered a seat on the tube these days as my bump is very obvious, but this morning no-one did and I was too engrossed in my book to glare at people 'til they looked up. I felt ok at the time but am knackered now after standing for over an hour!

You have been very brave hesto and congratulations :)

My twins were DCDA so we didn't have the same worries as you but I worried often about pre-term labour etc, I can't even begin to imagine how you must have been/are feeling.

There are some great specialists at Kings, I am sure you are in good hands.

Remember to ask ANYTHING you are not sure of/not happy with.

Please do let us know how you get one.

Thank you neversleepagain, that's really nice to hear! You're right about King's, the treatment we've had there has been amazing, and I'm constantly writing lists of questions for them so I don't forget.

Thankfully, pre-term labour doesn't seem to be a worry just yet, but I'm sure I'll get to that stage sooner or later. Fingers crossed I can keep them cooking for a good while yet.

I'm staving off thoughts of c-section at the moment, as it's a bit scary to think about yet, but I think I've pretty much accepted it will have to be that way.

Hetsto, how did your scan go? X

Hi Silverangel! It went really well thanks! Our girls seem to be doing really well, all things considered, and the littlest one has been working hard at growing this last week, it even looks like the bigger twin has slowed down to let her catch up! Either way, both their heartbeats are ok and they've both got enough fluid around them now too, so hopefully they can keep getting bigger. We're so relieved and happy that they seem to be doing ok, I wanted to dance right out of the hospital!

There'll be lots more check-ups and scans to come and the consultant was encouraging me to finish work sooner rather than later but all in all I feel like we're going in the right direction.

I'm not sure what to think about when to finish work at the moment, as I'd obviously like as much time with them afterwards as possible but this last week I've been feeling really big (I seem to be growing about an inch a week at the moment) and getting around is much harder now. It sounds strange, but it's also a bit tricky to fit in eating enough to keep us all going when I'm at work. I feel like I'm constantly getting up to go to the fridge or canteen!

Fantastic news!! My little one was actually the bigger one at birth - Prof Nikolaides said it was impossible to split the placenta 50 / 50 so there could always be some difference but not due to TTTS which by this point is effectivley cured. She's still about 1lb heavier now.

I know its not ideal but if you're really struggling could you get signed off? After everything you've gone to growing the babies is the most important thing now. I can't remember the rules now with mat leave starting early but an employer can't count being signed off in pregnancy on your sickness records. Its a tricky one, in a way I was glad my back gave out as it solved the problem for me. I had originally planned to take 3 weeks leave from 30 weeks and then for mat leave to start at 33, as it was mat leave kicked in automatically when they were born at 31 and then the annual leave tagged on to the end.

Yes, he explained that they may never fully equalise in weight and that doesn't really matter as long as they're both in a good range.

Thank you for the advice and experience on maternity leave too, I'm really undecided at present as it's only really been this week that I've found it quite hard and I am still managing ok. Having said that, I agree that my absolute priority should be growing these babies and keeping us all safe! What did you do once you'd finished work? Was it complete bed-rest or were you able to get out and about a bit?