Does anyone know or experienced TTTS )Twin to twin transfusion syndrom)

[Shajbm]

Hi there,

I'd like to hear from anyone out there who has experienced this and what treatment options there are and just be able to have someone who understands and can chat would be great.

Looking forward to hearing from anyone.

[andrewsmum]

No sorry, can't really help you at this stage. I was only diagnosed with TTTS today at my ultrasound :crying: So I am experiencing it now.

They would want to check via ultrasound every two weeks to see if there's any dramatic change in the babies sizes, amniotic fluids etc. Now they want me to come in again tomorrow and then weekly to monitor it.

It's a little scary, especially when the dr was talking about having to drain out the amniotic fluid etc so am now on the net looking up information on it. You can also count on the Australian Multiple Births website advice and information, there are some people on there who have experienced TTTS.

Good luck with the pregnancy.

[Shajbm]

Hi Andrewsmum...I'm sorry that you have received this news. It's a difficult one to deal with. Hopefully your outcome looks better than mine. Good luck with it and let me know how you go.
At the moment with me it's a waiting game. I too have to have 2 weekly ultrasounds to check growth pattern etc, but because I've been diagnosed at 13 weeks (I'm now 15 weeks) my doctor doesn't seem too hopeful. There are things to be done but I have to wait till I reach at least 18 weeks. So the next 3 weeks or so are crucial, I have to hope that I the babies can hang on long enough for something to be done.

Not sure what to do at the moment and who to turn to.

Anyway, chin up and let's pray for each other.

[kadownie]

Hi- sorry that you guys are going through this- my twins are fraternal- so it wasn't something that we experienced. I have met someone who had the laser surgery (?) I think- met her at the park- her twins were two! It was really interesting talking with her!

I wish you both the best!!

[Shajbm]

Thanks Kadownie.

[Shajbm]

Hi Runningbear...Welcome and thank you for sharing your story.

Just a quick update. The threat of TTTS has subsided for the minute...All is stable with the babies and I will still be closely monitored but at least I'm a little more relaxed.

Have a great week everyone.

[Duchessa]

My ob began to be suspicious of TTTS at about 29 weeks. Prior to that we were having 3 weekly u/s but then we went to weekly. It was hard - we have two residences, for 4 weeks I had to drive a 7 hour return trip for monitoring, the other few weeks the drive was a 4 hour return. Dh was away a lot at that time, so I was largely on my own. I think that was the most stressful thing, facing that horrible thing of not knowing/being out of control, and not having support/understanding from my partner. If you can, involve your partner, so you aren't shouldering all the stress alone. God knows men seem to find it hard enough to understand the meaning of pregnancy when everything is normal, let alone support you through high risk twins!!

I was induced at 37 weeks because the ob thought there was an 400-800gm difference in size (which had been growing consistently every time they were measured for weeks) and that twin B was running out of fluid. As it turned out, they were perfectly sized (only 60gms between them) and I don't know what was really happening with their fluid levels... As we all know, u/s monitoring is a pretty inexact science at best.

The girls and I were lucky, my ob erred on the cautious side and we won - it is a tense time and I wish you both all the luck in the world to get your babies through it. :hugs: xx