TTTS at 15 weeks and really worried

[SurpriseTwins15]

I'm 15 weeks pregnant with identical twins and am being referred to Kings College London as I have TTTS and there is a 20% difference in size. Im going to speak to a consultant about my options, they have been quite blunt (which I appreciate but make me more upset) as the outlook is not good. I know I shouldn't but I've been googling and the results are terrifying. Has anyone else been though TTTS this early?

Aw surprise I'm sorry. Have you been on TAMBA's website?
Keeping everything x'd for you. X x

Hi Surprise.

I was diagnosed with severe TTTS at 15 weeks at Kings. Had to have the laser ablation straight away. My twins are 4 in August and starting school in Spetember and are absolutley fine.

When is your appointment with Kings? Do you know what stage the TTTS is?

Please ask me any questions you have.

xx

The outlook isn't too bad. I had very severe TTTS and lost both twins a couple of weeks after having laser surgery, however my consultant told me this actually only happened in20% of cases severe enough to warrant surgery. 80% of cases at least one twin survives.

All identical twins have some degree of TTTS and only a very small proportion require surgery. They probably will just want to keep an eye on you. Good luck with everything

Hi guys, thanks for the messages I'm still waiting on my appointment at Kings College London as the Dr I'm seeing, Dr Nicholaides, is in Crete on a conference atm. They are asking me to go for a consultation so they can decided how to proceed. My hospital sent the referral on Friday so I'm just waiting. For ladies who've had the surgery what was the timescale from appointment to surgery? And what was your recovery like?

I was referred at 13 weeks and monitored weekly. Had the surgery at 19 weeks. The actual op was fine. Not painful at all. It's keyhole and done under local anaesthetic. Very short recovery time.

Thanks Nanny that's good to know! I've never had surgery before so am a little scared and all the American stuff says weeks of bed rest so was unsure about it.

I was diagnosed on the Tuesday and had laser ablation on the Wednesday Morning at St George's in London, it all happened incredibly quickly.

It was complicated by it being identical triplets, we had a single survivor who is 5.5 now

Hi, Prof Nokolaides did my surgery:)

I had the surgery literally within an hour of being diagnosed - I was lucky that I was under kings anyway and it was picked up in my routine scan. A case of right time / right place for sure. It was so severe neither of them would have survived without immediate intervention.

I terms of physical recovery - I didn't need any. I felt so much better once all the excess fluid had been drained 3 litres!). Some hospitals use a spinal block or even general anaesthetic - I just had a local so was up and around as soon as it was done. Had to wait 4 hours for a scan to check they bit still had a heart beat and then went home.

Emotionally, it was exhausting. I took a week off work and I actually now think the rest was really important.

Also I'd try and stay away from the American sites, after my seriously extensive research they have quite different protocols to is, often using amino reduction and bed rest only, not so many hospitals offering ablation.

Thank you everyone for your replies you've made me feel a whole lot better. I'm a patient person but this is all really getting to me x

Fingers crossed for you. I'm having id twins too and worried about this. Yes yes to not googling as everyone is different especially the American sites. I'm trying to tread a fine line between being informed but not worrying myself. At least they have picked it up and they will be looking after you. Good luck and let us know how you get on!

Thanks I have my appointment tomorrow at 12, so fingers crossed x

Good luck Surprise.

Just a note - take snacks / drinks, most if not all of my appointments at the FMC were massively late and, if its feassible for you, take the train to Denmark Hill - parking is an absolute nightmare.

Hi ladies, Had scans and it is TTTS and SIUGR so waiting to hear if I qualify for the laser surgery as its their only chance of survival. Had to wait 4 1/2 hours for the surgeon but I've now had the procedure. All went well and now I'm having rest for an hour then l have another scan to see if it took x

Good luck, hope you get good news later x

Thinking of you, all the best xx

Hope it all goes ok for you, we had ttts but with a 30% difference in size but we were too late for surgery as we had passed the threshold and I had them early at 30 weeks but they have done well and will be 11 next month. I will be keeping my fingers crossed for you.

Hope everything went well for you OP

Thinking of you xxx

Thinking of you and really hope all is ok x

Thanks guys! Finally on my way home after a mammoth day. Second scan showed 2 heart beats and no leaks so safe to go home. Have to go back for a scan next week, but to Basingstoke not London. Feeling quite tired as today has been so draining but we've done all we can do, it's now down yo them to sort themselves out x

Fantastic news!! I can't remember the statistics but they are really good if they see those heartbeats after the laser.

Take it easy now, rest as much as you can x

Unfortunately I have some sad news. The odds were not in our favour this time and we unfortunately lost the small baby, we now have to wait to see if the other baby survives as my body may think I have no baby so will miscarry the healthy baby or the big baby may be strong enough to fight it. I have to go back next week for a scan to see x

Really sorry to hear your news, take care of yourself. x

Sorry to hear this. Wishing you all the best with your baby xx