18 weeks with MCDA twins and Twin 2 has absent end diastolic flow

[user1467277837]

We found out at our 12 weeks scan that we're expecting identical twins. We have been scanned every two weeks. At 16 weeks, there was slight difference in size but they were happy that they were both well Twin 1 on 50th centile and Twin 2 on 10th centile. At 18 weeks we have been scanned and both have stayed on the same lines and gained well. But during the scan they have said that Twin 2 has absent end diastolic flow. They have referred me to Cardiff Fetal Medicine Unit for further scans. The consultant we saw did not have much to say apart from to go back once we've been scanned. I feel completely lost and not sure where to go for information or how to feel. The referral may take a week or so. I'm not sure I can be a week like this not knowing what's going on. Any one else experienced this? Any advice would be gratefully recieved.

[User19872534]

Hello! Congrats on your twins! I'm also 18 weeks pregnant with MCDA twins! Let me start by saying that "absent end diastolic flow" is not necessarily as scary as it sounds!

One of my twins was diagnosed with the same thing at about 15 weeks, but actually at my last scan (17 weeks) the flow was positive again! My consultant said that end diastolic flow can vary quite a bit depending on how/when you measure it.

I think the main think about end diastolic flow is that having an "absent" flow is not necessarily causing problems for your baby right now, but it can be an indication that a problem might be developing. In my case, my consultant thinks I am probably developing twin to twin transfusion syndrome (TTTS). However this is NOT just based on the end diastolic flow, but also on other things - Mainly, one of my twins has a lot more amniotic fluid than the other.

So even though I think you shouldn't get too worried yet based on this information alone, I completely understand your fears and worries. I've been struggling emotionally in this pregnancy since about 12 weeks (when my consultant first saw sings of TTTS) and I know what a tough road it can be.

At this point it is absolutely vital that you are seen by an expert. One week to wait for the referral sounds okay to me (I'm being scanned once a week at my fetal medicine unit), but if you are worries, why don't you ring your midwife/consultant? Or ring the fetal medicine unit directly? I have previously spoken to my consultant on the phone when I had a question. They tend to take really good care of you at the FMU because they know many women who go there are not having an easy time.

Anyway, I wish you all the best and I'd love to chat more if you like. Do PM me is you have any other questions!

Good luck

[ljc86]

Thank you so much for you reply! It has been so hard to find any information on this. I think the worst part has been the not knowing. The consultant in the hospital couldn't say much until I saw FMU. Your story gives me a lot of hope. I'm off work and resting as much as possible. Hoping that we'll see Twin 2 continue to grow during the next few weeks. I'm a wreck, and it's not like me to cry so much! Pregnancy hormones aren't helping! I was only referred around 2 days ago. I will ring them tomorrow if I haven't had a scan date, just to check.

Thank you so much xxx

[User19872534]

Hi! Yep it's hard to find good information! My advice is to stay away from Google and to listen to your consultant! I have been a total wreck as well so I get how you feel. While every one else is worrying about nausea on weight gain and prams I'm just so worried for the well being of my babies, and I can't even think beyond the birth yet! I would say that you are going through the hardest phase now - You've only just found out that there might be a problem and you are trying to deal with that. I've had a few weeks to deal with the news and are generally feeling much better (well, calmer!) now. You will get there, you will! Just take it one day at a time and go easy on yourself! In terms of rest/work, my consultants told me there is no physical reason to rest & that I can continue as usual if I feel up to it. Psychologically work has been a real help as it helps me to take my mind off things, but I realise not everyone is the same! (Also I work in an office job - If I had to do more physical work I'm not sure I would cope!). Anyway, I'm just trying to say - You do what feels right for you. Watch Netflix! Eat whatever you feel like! And cry when you want to:-)

Hope the week will fly by for you.

xxx

[ljc86]

I know how you feel about not being able to think ahead! It's odd feeling. Now that your flow is forward/normal, what happens now? I very much hope that we will both be ok and that the babies will be here safe! I'd love if you kept in touch. It's great to have someone in the same position.xx

[doleritedinosaur]

Hi, I don't have any experience of twins/the disorder but I was seen at Cardiff FMU & they were absolutely brilliant, they answered any questions I had & took their time through the scan to explain what they were doing & why.

Also they gave me some websites/journals to look at myself to discourage Google.

Sorry I can't help beyond that but Cardiff FMU is a good place & telling them your concerns does help.

Good luck & best wishes for your pregnancy.

[User19872534]

Hi again! Just to say I've sent you a PM:-)

[User19872534]

Sounds like you'll be in good hands at the Cardiff FMU:-)

[hopeful31yrs]

Second recommendation for the fetal unit in Cardiff. They have been brilliant with us and supportative. Ask all the questions you need to ask x

[ljc86]

Thank you all for your support, I really needed it. I've heard great things about Cardiff, just hoping to been seen soon because the not knowing is the worst part.xx