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.

good news indeed.

My only query would be as someone else said - I think 2 weekly scans is normal for ids twins (that is what I had from about 16 weeks on). I would think if you already have some suggestion of TTTS then 4 weeks sounds a bit long.

At one stage I had scans every 3 days when they were worried. Mine didn't develop TTTS in the end.

Ask your consultant about AAAs (arterial arterio anastomoses or something like that) - they are connecting tubes in the placenta that pretty much rule out TTTS - if they can find them it is very reassuring - usually they are hard to spot and probably not until about 20 weeks. I was mightily relieved (as was the consultant) when they spotted one on our scan.

thats the best news ever hon, i bet your over the moon!!!

Great news, so pleased for you - I was just looking you up after your earlier posts, thought you must have had your scan. Maybe you could come and join us on www.mumsnet.com/Talk/2290/453417 where there are others expecting twins or who have recently had them. One lady is expecting ID twins around the same date as you, I think.

I didn't see this thread originally - am so happy for you!

Deffo agree on the scanning thing - I'm having ID twins, 2 sacs, 1 placenta and I'm being scanned every 2 weeks to make sure all ok, and that's without any of the trauma you have already been through...

As GBB says come onto the other thread soon!

Just wanted to echo what the others said. Fantastic news. Is worth pushing for 2 weekly scans. We had 2 weekly scans- consultant did not give us a choice about it, and then towards the end had weekly scans. (Ours were monochorionic, diamniotic)

Hello Ladies

Thought I would give you an update on my condition - I am afraid it is not very good news

Came back from holiday and went for my scan yesterday morning. The consultant has definitely confirmed TTTS with T1 being the recipient and smaller T2 being the donor. T2 still has plenty of amniotic fluid around him/her and is moving freely. T2 is smaller but bouncing around.

I am able to feel them moving inside me which is lovely.

My consultant has been speaking to those at Kings College and at the moment they do not want to intervene. As T2 has plenty of fluid (although a lot less then T1) they want to wait a further 2 weeks before making a decision as to do laser intervention or see how the DTs are coping.

I feel numb and am not sure how to get through the days.

I am able to feel them moving inside me which is lovely. - please try to focus on this for now until the next appointment.

It must be so hard but you need to stay positive and calm as much as you can, do anything that makes you feel good right now like the accupuncture.

I really hope things work out for you all!

I have ID boys whos are now nearly 6 and had the same problems as you. My consultant didnt expect me to reach 30 weeks. However, the TTTS managed to right itself somehow and I ended up being induced at 37 weeks!!One was 5lb12 the other 5lb 2. Neither needed special care. We had been trying to get pregnant for 4 years & had just about given up[I also have a son who is now 15.]so I can totally understand how you feel.Keep strong & rest as much as poss.Good luck. Hang on in there!!

Groovychick2 - how lovely to hear a positive outcome. I go from absoloute despair to trying to be strong for the babies and my older babies (DS ages 12 & 11) too.

I have asked for weekly check ups with my consultant as I felt that the waiting 2 weeks was too much for me. They have agreed to this and I feel better for it.

LoveMyGirls - it really is lovely to feel the babies move. I look upon it as them sending me messages to not give up on them.

I am trying to make a determined effort to keep calm, keep strong and be positive.

I will let you know how we are all progressing.

xx

I just wanted to send you a message of support. I'm pregnant with id twins (am 17 weeks) and being scanned every two weeks for ttts. There is a small discrepancy in size already but they're not yet worried. I really really hope it works out for you and think you are being very brave. Glad you are getting weekly check ups. Stay strong and let us know how it all goes. How many weeks are you now?

Nellstar - Hi hope all goes well with your pregnancy.

I am now nearly 19 weeks. Had another scan on Tuesday. The smaller baby seems to have grown quite a bit in a week and the consultant said that the blood flow seemed to be a bit more positive. All good news until he said however the smaller baby looks like it has more fluid on the brain. This apparently means that the baby's brain may have been damaged earlier.

My nightmare just got worse and feel even more terrible than before if possible.

It may not be definite but he needs to wait 2 weeks to do more measurements and testing on the baby's brain. How do I cope with this?

I feel the babies move all the time which is fantastic but at the same time I worry about losing them both.

I go through anger, sadness, numbness, fear, depression each day.

I have 2 ds aged 12 & 11 and obviously I have to act as normal with them. They are terribly excited about the DTs arrival and I worry about letting them and my DH down.

I have to find the strength somewhere .............

Oh minmooch I am so sorry. It must be terrible not knowing how things are going to turn out. It is not your fault! Please dont blame yourself although I can imagine why you feel that way! I hope things work out. Let us know so we can try and help you through this.

Oh Minmooch I am so sorry, you poor thing. Firstly you are not letting anyone down, the awful thing about ttts is the mother can do absolutely nothing either to prevent it or make it better. Why does he have to wait two weeks? It seems too cruel. All I can say is scanning is an imprecise science, my SIL was told my niece had 2 bilateral tumours on her brain and had Edward's syndrome. She is in the top set at her grammar school now and was perfectly fine. Are you being seen by Prof Nikolades I think he's called at King's. He's supposed to be the expert in ttts worldwide - can you get a referral? My heart goes out to you so much, I feel worried about it daily, particularly after the heartbeats were so different at my last midwife appointment. I went to a yoga class yesterday and said I felt worried and she all but accused me of causing it by worrying! Ridiculous. Most people are understandably ignorant about ttts, but it makes it very lonely for prospective parents. If you're in London and ever want to meet and chat let me know, as we're very close in our dates. I think you should insist on being seen sooner. Wishing you strength..

minmooch - I'm under the care of Prof Kypros Nicolaides and his team and I can honestly say that they are fantastic at Kings. Please see if you can get referred there. Their equipment is so high tech - it blows my mind every month I go there.

Good luck with everything. I'm thinking off you. xxx

Grr Nellstar I hate that yoga thing they do where it's all your fault... Like not having a "beautiful" "natural" birth because you aren't enough at one with yourself... grr and grr again!

My best wishes to you MM. Get good doctors and get them soon. The thing with scans is that you find out so much but at the same time you feel strangely out of control... Very good luck.

pophas2boybeans - I have made an appointment to see Prof Nicolaides privately on Wednedsay evening at the Fetal Medicine Clinic. I decided I couldn't wait to get to the absoloute desperate stage before they refer me to Kings (having said that my consultant has been in contact with Kings about me and discussed my condition - as both babies have fluid although one less than the other - they feel it is not yet time for laser intervention.) I want to have a 2nd opinion and will wait to see what Prof Nicolaides has to say.

Nellstar - glad to hear that sometimes terrifying news turns out to be very wrong indeed - I will keep this thought close to me.

Thank you all for your thoughts - I'll let you know how we all get on.

xx

Good luck, minmooch, thinking of you today

hope you get VERY good news from the Prof.

thinking of you all today

Let us know how things go this evening.xxx

Hope things went well with Prof Nicolaides last night. Thinking of you.

Any news, minmooch?

Hope you have some good news soon, thinking of you

Minmooch How are things?? Worried not heard from you.