Early warning of TTTS

[Franchini]

Yesterday I had 17 wek scan and it showed more Amniotic fluid in one sac than the other and no bladder on one twin. Got another scan next Friday. Anyone got any positive stories please??

[BigGlasses]

I have no personal experience, but there was a lovely thread thread in pregnancy topic a couple of years ago. I've justsearched for (I'm on phone so now sure how to link) called twin twin transfusion syndrome. Started on 11 apr11. If you search for it it will be of great help I'm sure.
Multiple births is a great topic, but most multiple mums are pretty busy so it can be a bit slow to get responses, but I'm sure others with more personal experience will be along soon

[MrsStevo]

Hi Franchini - firstly, bless your heart. What a horrible, horrible time you must be going through. I am the OP from the april 2011 thread that BigGlasses referred to (lovely message by the way BG!) so I can speak with some authority when I say that i have some understanding of what you're going through.

My story (in brief!) - found out i was pg with twins at 7 week scan, confirmed MCDA at 11 weeks and was then scanned every 2 weeks. At 20 weeks i was diagnosed with severe TTTS - like yours, 1 of my twins was swimming around in a sea of amniotic fluid and the other had none, no visible bladder and an intermittent/absent heartbeat. I had laser surgery at birmingham womens hosp 2 days later (7th april 2011 9:15am.... I'll never forget!). Long story short, my twins survived the surgery and i came home to lincoln that evening and was then scanned every 2 weeks at lincoln. We had several hiccups - thought to have recurrent ttts so went back to birmingham at about 26 weeks, a brain abnormality (which turned out to be nothing) and reduced movements. All of that meant that on occasion i was scanned every 3 days, sometimes just once a week, right up to when my waters broke at 2am on 20th july 2011 - 35+1 weeks gestation.

So here's the happy ever after: my girls are now 2 years 3 months and as healthy and developmentally 'normal' as any other their age.

There were four of us on the original thread and we ALL had our happy ever afters. We were lucky to find each other and do some virtual hand-holding through an incredibly traumatic and worrying time. Thank god for mumsnet or i wouldn't have coped i'm sure.

If you are on facebook then there is a TTTS uk parents page which is equally invaluable. I would suggest you find any source of support from people who have been through / are going through what you are as they are the only people who will truly understand the lonely feelings of deep sadness and worry you will be having.

And I'm here too if you have any questions or want to talk through how you're feeling.

Wishing you lots of positive thoughts and good luck for everything you will be going through xxx

[Franchini]

Thank you so much for your reply. I will join the face book group. It's nice to know we aren't on our own. I will keep you posted. Just hoping that Fridays scan will be ok for now!.x

[twinnies26]

Hi Franchini,

I also have two healthy TTTS survivors - I am another one of the ladies who was on the same thread that is mentioned above (waving at Mr's S :) )

Between the four of us, we kind of broke the statistics so to speak - in that between us 8 lovely little girls arrived into this world :)

My TTTS was also severe upon detection and i had laser surgery within 3 hours of detection otherwise our little girls would not have made it. Very similar story to Mrs.S above. But I was scanned every week post surgery as although fluid levels and blood flow were better my babies didn't grow that well. I had delivery at 34 weeks. They had very little problems when delivered but DT1 was white as a ghost and DT2 bright red. DT1 was a little poorly for the first week and took longer to start thriving.

Our girls are also develeopmentally normal for their age, the only thing that differentiates them from their little friends is that they are still very small - but the nurses are happy enough with them :)

We never knew of the TTTS support pages at the time so like Mrs. S our thread was a life line for me. I would not have made it through without it. It was the most stressful time of my life. I think it does help to talk to other people who have experienced TTTS as they understand how you are feeling. I only recently joined the TTTS Uk parents support page and it seems to be a very active page. Like Mrs. S i am still on mumsnet and happy to chat if you need to.

Good luck with the scan on Friday, will be thinking of you and your little ones

Xx

[silverangel]

Hello, I'm the other positive story from that thread (hello Twinnies, Cake and Mrs S!).

I was diagnosed at 19 weeks, one baby no fluid at all in one sac, severe polyhydraminos in the one, heart under pressure, absent / intermittent EDF - had the surgery that day as an emergency, there was no other option than to have it there and then.

My girls are now 27 months old and thriving after being born at 31 weeks at a teeny tiny 3lb1 and 3lb3. You would never ever know to look at them and in terms of development the horrible start they had.

Same goes for me, I don't think I would have got through it without that thread and the the support that came with it - it is so hard to explain to other people what you are going through who don't understand it.

My heart goes out to you - and sending you lots of positive thoughts for your scan on Friday. If you have any questions do come back and ask, and let us know how you get on Friday xx

[Franchini]

Thank you all so much for all your messages.
We had the scan ofn Friday and they could see bladder and stomach in both babies and the doctor said we are in the clear for now. I am so releaved!
I have got my 20wk scan on the 15th November so hopefully all will be ok then too, I will let you all know how we are getting on.
Thanks again, Franchini

[neversleepagain]

Great news Franchini :) Do let us know how you get on during your pregnancy :)

[twinnies26]

Brilliant news! Babies are great little fighters :) Hopefully it will all continue to run smoothly for you. Thinking of you and yours Xx

[CakeForBreakfast]

Hello Franchini.

i'm so pleased to hear the fluid levels have resolved.

i'm the fourth from the original thread and its been mentioned that we all had our babies safely.

The hospital will be monitoring you very closely and we will be here for you if you have any worries!

Good luck for the scan tomorrow