TTTS - anyone else?

[miraculous2]

Diagnosed Stage I a week ago and stable for now. It's terrifying but I'm having a brave moment and wondered if there's anyone else out there experiencing this or having gone through it in the past.

I'm on the UK Parents FB support page - they're great. I just need to talk about some aspects of it with people who know what it's like.

Thanks.

[slightlyinsane]

We discovered our dds had ttts a couple of days after they were born. From about 30 ish wks fluid levels and growth were starting to trip alarm bells but the next scan that they would book me in for, would show them as being ok. Personally looking back I think it went undiagnosed and didn't occur during labour as they tried to tell me.
How many wks along are you? Have they given you any recommendations of what you should do?
I doubt I can be of any help but I'm here if you want to pick my brains.
My dds are nearly 8 wks now, so still all fresh in my mind.

[Waffles80]

Hi there, congratulations on your pregnancy and I hope you're as well as you can be - it must be very worrying. I have no experience of TTTS, but thought it might be helpful to know that Tamba offer a lot of support and their web-boards might help you get in touch with other women with experiences hope those with some experience can help reassure you.

[miraculous2]

Hi there and thank you.

Waffles I feel very well, I was fit and healthy to begin with so it all helps I suppose. I've had some great info from Tamba but I've never accessed their boards so I will probably have a look there.

slightly, that's a shame they weren't diagnosed but if you're right, and my guess is you probably are, you would be the only person I've known about to have come through the full pregnancy without it progressing to later stages and having the laser surgery. (I've read a lot of people's stories). In which case you could be very helpful - ours have been stable at Stage 1 for over a week and I'm wondering what the outcome would be like if they made it to birth in their current conditions. Were your girls very different sizes? What were their complexions like? Did they look very different? Are there any other things you've noticed/ that have been picked up? I hope you don't mind the questions and I fully understand if you'd rather not share details. It sounds like you've done a great job getting them into the world anyway - well done!

There are no medical recommendations - nothing you can do to cause or prevent it, make it worse or better. Just the obvious things you can do in any pregnancy to make things better for the babies - diet, rest, etc. I'm at 19+2 and I've been advised to carry on as normal for now. I think that would only change if I had the surgery and/ or started having warning signs of labour or leaking fluid and so on.

Thanks again

[slightlyinsane]

I am more than happy to answer any questions, I struggled to find helpful and encouraging information when I was looking.

The girls were 4lb 11 (t1) and 5lb 10(t2) although written down it doesn't seem much they looked very different. At 6 wks they were 7lb 4 and 8lb 11 the size difference has been slowly increasing.
Complexion wise they couldn't have more different. T1 was the donor and deathly white. T2 was lobster red. The Dr said we may always notice a difference and at nearly 8 wks there is still a small differenc but nowhere near what it was.
Strangers give me strange looks when I tell them they are identical, I do find myself trying to see if they look alike. Funny really as I panicked about not being able to tell them apart. As time goes on I can see some similarities but t1 still has the premie look whereas t2 is a chubby little girl.
At the moment there's nothing else that I've picked up on and they were given the all clear from the hospital at 3 wks.
Feel free to ask anything I wish I'd of had someone's brains to pick at the time.

[miraculous2]

Glad you've found the UK parents group on FB - I was going to suggest you ask on there for some info and support. Your girls have been very lucky and I'm sure will even out. In percentage terms, they're the same difference as they were at birth so at least the gap hasn't gone up (even though their weights going up makes it look like that).

I had another scan today. Donor twin's fluid has decreased again, slightly, but they're still considered stable at Stage 1. Friday morning for the next one. Also got a check-up in day care as I've missed twins clinic checks because of this diagnosis so thankfully reassured that my own health is good.

Back to the waiting game.

[slightlyinsane]

Ha ha I had a look after you mentioned it in your first post. The suggestion of TAPS makes things a lot clearer.
I hadn't done the maths on the weight difference, I'm not worried about it in the slightest, there both gaining well and that's enough for me. (Wasn't sure where to start)
Glad to hear things are stable for another scan, the waiting game is the worst. Which hospital are you at?

[miraculous2]

Yes, I had to look up the TOPS/ TAPS difference again. You're right to go on there for more advice about after birth - not much of that around, is there? It seems like they're good for helping you advocate for your babies when confronted with indifferent/ unaware medical people.

I've had excellent care so far at the Princess Royal Maternity in Glasgow. For surgery it would be at Glasgow's Southern General or the Birmingham Women's if the surgeon up here is still on holiday (maybe another week or so..?).

Did you have your girls at about 36 weeks then?

[slightlyinsane]

Yeah they were 36+2 supprised I got that far, I had to have steroids at 34wks after having contractions. Nothing around for afterwards only worse case stuff which isn't what you want / need to read all of the time.
Aren't there any more surgeons closer? That's a heck of a way to travel back afterwards.

[miraculous2]

Only one surgeon in Scotland performs the laser ablation. It used to be that all referrals went to Birmingham so they kept the arrangement for times like this. I don't know geographically if there are any closer e.g. NE England as I've only heard of other people having surgery in London and Bristol as well as Birmingham and Glasgow.

[xalyssx]

I had TTTS at 17 weeks. I will tell you more about my experience in the morning.

[slightlyinsane]

How was your scan?

[miraculous2]

Hi,

We're still at Stage 1 but the fluids around the recipient are over 10cm so they also checked my cervix again in case I was moving towards labour - it's in good shape though.

Had a bit of a scary night but things seem to be settling down. How are your lovely girls?

xalyss I hope you come back!

[slightlyinsane]

Glad you're still at stage 1. What have they decided to do next?
The girls are doing ok, they have a little tag team going on at night which is wearing a little thin. But the good news is Aoife moved up to size 2 nappies.