TTTS: My heart is breaking ......................

[minmooch]

I have 2 ds aged 12 & 11 from my first marriage.

Have been ttc with my 2nd dh but have recently suffered 3 mc at 8 weeks, 12 weeks and 5 weeks.

Got pregnant straight after the last mc and at an early scan was told I was pregnant with id twins. Felt honoured and blessed.

At my 12 week scan I was told that I was a week behind in my dates - no problem. But that one twin is significantly smaller than the other and that they suspect twin to twin transfusion.

they both had strong heartbeats although the smaller one's is beating faster than the other. the consultant said this could be due to it having to work harder. He also said that they were each in their own sacs but obviously sharing the placenta.

I am devastated, shocked, angry at the unfairness of it all, feel helpless ......... I keep having panic attacks where I cant get my breath. I dont know how i will find the strength to cope if I should lose these two.

I have to wait until 5th August to see how the twins are developing and if they still think it is ttts. I believe that if it is at this early stage then my chances of keeping the twins is very slim.

I am heartbroken and don't know how to cope.

[BoysAreLikeDogs]

Minmooch I have no experiecnce of multiple PG but am sending sympathy, you have had, and are having, a very tough time.

[gruesomefoursome]

hiya hon, this must be so hard for you, i have identical twins and they had the same sac and placenta and i was scanned every 2 weeks. are they doing this for you???. as far as i know there are various things they can try so dont take any crap and get a second opionion. keep your chin up love and if you need to talk email me on [email protected] xxxx

[MatNanPlus]

I knew TTTS girls who had treatment in uturo to lessen the blood bond and allow the smaller twin more supply, they were born at 32weeks 4 & 6 weeks SCBU and are now active 3yo's.

[goingslowlymad]

minmooch, I didn't want to read and run.

I had fraternal twins in March this year so didn't have the complications of ttts, but can imagine how stressful this much be for you.

You'll probably have plenty of scans to monitor babies and I understand there is a procedure they can do to help.

Best of luck.

[mckenzie]

sending you lots of sympanthy and positive vvibes minmooch. I had to do a search on the internet to find out what TTTS is and found an Amercian site that looks quite good www.tttsfoundation.org.

[glamourbadger]

Try not to worry until you know for sure. Harder said than done I know!

One of my ID twins was significantly larger than the other - it was IUGR rather than TTTS. There is a high survival rate so try to stay positive. They will probably be delivered early and might need some form of intervention but they will monitor you very closely. I had almost daily scans for 4 weeks and they got it right down to the wire - they got me to 29 weeks. The technology is amazing, especially the doppler scans that monitor bloodflow. Hang in there - let us know how you get on.

[victoriagirl]

Hi Minmooch
We had id twins in Feb. Both sharing placenta. At our nuchal scan in pregnancy, they came out as one very high risk and one low risk for DS, and so they thought it was ttts. We were beside ourselves with anxiety- and like you had to wait a week to find out. (we had also had a recent miscarriage). It was the longest week of my life. Had to cancel a holiday and basically just sat here for the whole week, terrified. At the next scan, they had somehow righted themselves, and are now strapping 6 month olds! The rest of the pregnancy was still stressful as those early worries never went away. But we got there in the end.
I am keeping all my fingers crossed for you.

[minmooch]

Many thanks for all your messages of support.

I had an appointment with another consultant at the hospital on Tuesday. At the scan there they said both babies had grown during the week and from the measurements the discordance in size seems to have got a bit smaller. This consultant was more optimistic and told me to keep my fingers crossed but to be quietly confident.

Still don't know how to feel - except relieved that they are both still there and in with a chance. I now have pictures of the two of them and somehow that gives me strength.

My scan on Tuesday 5th August will tell us more and I hope that it is good news again.

It is a terribly tough time - I have spent a week trying not to imagine myself with two small babies and now feel a slight glimmer and am allowing myself a little bit of hope.

Glamourbadger - what is IUGR?

I will let you know how Tuesday goes - anyone who prays out there to whoever please send a little extra one for my babies.

xx

[glamourbadger]

Intrauterine Growth Restriction - it's where the placenta isn't providing the baby with enough blood to grow. It affects singletons as well as twins. With TTTS one twin tends to grow at the expense of the other but only one of mine was affected. My little girl is tiny (below the bottom centile) but is an amazingly strong little person, she can climb higher than many of the bigger kids at her playgroup!

[NicMac]

Very best of luck, will be thinking of you and your babies on Tuesday.

[NicMac]

Any news minimooch? Hope it went okay and your had a postive appointment

[allgonebellyup]

Hope it is good news minimooch

xxxxxxxxxx

[throckenholt]

I really hope things work out for you.

If it is any help I really didn't think TTTS kicked in until about 16 weeks - 12 weeks is really early.

When were you told id ? Because I don't think they can tell until at least 12 weeks - the membranes look very similar with fused placentas. Something to do with the way they join the placenta. Also with id twins it is often difficult to see the dividing membrane at 12 weeks so if you were told they clearly have different sacs at an early stage that may point to not being id too.

It might just be possible that one baby is actually younger than the other - ie double ovulation a few days apart.

Is your consultant a twin specialist ? - if not ask to be referred to one - because if you have TTTS at an early stage you will need a real specialist.

[PigeonPie]

minmooch, how are you doing?

I'm afraid I have a negative experience of TTTS so I don't want to dwell on it here, but was just hoping that your scan went ok yesterday.

However, if it is TTTS and the news isn't good, I am more than happy to talk to you. email me at pigeonpie at webowls dot com.

[minmooch]

Amazing news - I had positive news from my scan yesterday.

Both babies still there and the little one has made up quite a bit of difference in size. It is still smaller but now only a 10% difference as opposed to 25% difference a couple of weeks ago. They are both within the spectrum that they should be. Blood flow seems to be good to both babies and they had the required number of hands, feet, legs, arms, noses etc. Nuchal fold was the same for both and looked normal, noses seen, amniotic fluid good around both and membrane nice and flexible.

The consultant thinks that the TTTS has now stabilised and both look good. Hurray Hurray Hurray!

The consultant has dealt with twins lots of times and has also referred to Prof Krypos Nicolaides when necessary. My consultant has told me that he will refer me to him if I need to go.

They do believe that the twins are id - one placenta but two sacs - but I know it is not an exact science. I found out I was having twins at 6.5 weeks and they diagnosed ID twins then. They told me at 10 weeks that they could see 2 sacs but only 1 placenta.It will certainly be a shock if they are born and turn out to be b/g twins .I don't mind either way, ID/B/G/same sex fraternal - whichever as long as they arrive.

I couldn't stop crying with relief yesterday and hardly feel able to believe it today. However, time for some positive thoughts. I know we have a long way still to go until they arrive but can I start to dream that they will join our family after all?

I am aware that TTTS can occur at any time during this pregnancy but will face those scares when and if they crop up. I don't think I will be able to completely relax during this pregnancy - which is a terrible shame. Next scan in 4 weeks which will hopefully continue to show good growth and healthy babies.

Thank you all for your thoughts - it does help.

I have had a couple of accupuncture sessions with a chap who works mainly out of the Whittington Hospital maternity ward. I will continue to see him as I believe he has helped in trying to keep me calm. I certainly would recommend accupuncture - with obvliously someone who specialises in pregnant women - so if anyone is thinking about it an is unsure - go ahead!

[PigeonPie]

Fantastic news! Hope all continues to go well; all best wishes.

[onceinalifetime]

Wonderful news - hope it's plain sailing for you from now on!

[onceinalifetime]

Wonderful news - hope it's plain sailing for you from now on!

[MarsLady]

Wonderful news! Congratulations btw

[PootleAndThePoseysMum]

Minmooch, my identical twin girls survived TTTS (they are now 5 months old). At my 13 week scan all appeared absolutely fine but by my 16 week scan I had severe acute TTTS and the recipient baby (larger one) was given literally days to survive. I immediately had the laser coagulation operation under local anesthetic at St Georges Hospital in Tooting under Dr Basky (FANTASTIC, FABULOUS, LIFESAVING HERO). The odds I was given was 75% of one or both dying but thank God they both survived and are absolutely fine. Please do check out the website for the TTTS foundation based in America, the lady that runs it is fantastic and will send you through loads of information. There is also chat boards there for you to ask others in a similar situation about their experiences (I am on the After Pregnancy Board) I have learnt an awful lot about TTTS in the last year so please do feel free to ask me anything. If you want my phone number please ask and I will be more than happy to talk to you.

I wish you all the best of luck, this time last year I was in your position and its incredibly difficult but there are more and more positive stories about about TTTS.

x

[PootleAndThePoseysMum]

Also, just re-read your posts, another scan in 4 weeks is too far away. I do not want to worry you but they should be scanning you at least every 2 weeks. If TTTS does kick in then it can be incredibly quick so 4 weeks is far too long. Please, please insist on another scan in a couple of weeks.

x

[spokette]

I had TTT with my fraternal twins and T2 was significantly smaller than T1. I had to have weekly check ups from 28 weeks onward because T2 was hardly growing and at the 34 week scan, they said that I had to have a C section the following day!!

The boys stayed in SCBU for over 3 weeks and are now healthy 4yo.

Good luck!

[pophas2beans]

minmoooch - great news. I'm so happy for you. I'm under the care of Prof Krypos Nicolaides and his team at Kings College hospital in London. I'm being scanned every 4 weeks to check that TTTS doesn't occur. Good luck for the rest or your pregnancy. Fingers crossed that we both have the best possible outcome!

[glamourbadger]

Great news! Always lovely to hear a happy outcome.

[NicMac]

Brillant news, do push for an earlier scan though if possible. Very best wishes and good luck for the rest of your pregnancy, keep us posted!