Expecting MCMA twins

[DestinyB]

I have just found out I am having MCMA twins, by having a private scan, I am exactly 6 weeks (one of the twins is measuring a day behind), both with heartbeats.

The sonographer was very quick to tell me about all the risks of monochorionic twins, which has really worried me. She did say although they were in the same sac, they had implanted quite far apart, which was apparently a good thing?

She mentioned the pregnancy will be classed as high risk and the NHS highly monitor this type of pregnancy, also that the babies will need to be delivered early by Caesarean section at around 32 weeks to reduce complications?

I have tried to research the sort of antenatal extra care required for MCMA twins, however can only really find information from America.

I have my booking appointment with the midwife at the end of the month, I have read that many hospitals have never even come across these pregnancies and may not necessarily know how to deal with them? I live in London.

I would be really grateful if somebody could provide some information on the extra NHS care, such as what is to be expected, also what to mention to my midwife to ensure I do get the correct care?

Thank you!

Ahhh lovely. I used to live in London 😊 thank you, sending good vibes to you too and let's keep each other updated!! 😘

@Wishing56 I’m also from Essex and have been told we are also having MCMA twins. Our scan was 7.6days along. I’ve been so petrified after reading about it. Would love to speak to you and see what and where you went.

@nm86 congratulations on news of your twins! It is very hard to see a membrane that early. MCMA is very rare in twins.
Hopefully at your 12week scan they will find a membrane (mine was very thin so hard to find but they found it) but if not then try not to worry as you will be so closely monitored throughout your pregnancy.
I was under the care of Broomfield. Normally after your 12week scan the subsequent scans from 16-24 weeks (every two weeks) are carried out by the fetal medicine specialist. Broomfield did have a lady that could do it but she was on a 6week pilgrimage at the time so I was sent to UCLH (University college london) as they are a specialist unit in multiple births.
After 24weeks I was scanned back at Broomfield with the normal scanning department as i was told the risk of TTTS reduces after 24weeks.

Any questions just ask happy if you want to private message me as well.

@SEtwins how are you getting on lovely?!

@MilsCookie Hi!! Our babies are a month old now 😃 They were delivered early at 32 weeks due to suspected mild twin to twin transfusion. They spent 4 weeks in neonatal care but they’re now home. It’s hard work but they are 100% adorable and we are totally besotted. 🧡

How are you getting on? I hope your pregnancy is progressing well! X

@SEtwins oh my goodness!!! I did think you must have had yours by now cos you were a few weeks ahead of me!! So pleased to hear they're doing well, must have been scary to find they might have ttts going on at such a late stage. I feel like we're out of the water with the risk of that now but I suppose it can still happen! We've had such a rocky pregnancy but my babies are still holding on in there (I'm 29+4 now). One twin has sIUGR and it has occasionally been type 3 so I have to have weekly scans to keep an eye on them. They're hoping for delivery between 32-34 weeks and of course I'm just hoping they stay in as long as possible as long as it's safe! How was your 4 weeks in NICU? Have you been home long? Must be so amazing to finally have them with you! Did you have girls or boys?! Xx

@MilsCookie I’m sure they are and will continue to take very good care of you and your babies! Do you know if you’re having boys or girls? Don’t worry about NICU if your little ones do need to spend time there - neonatal nurses really are special lovely people. Our little girls were in such good hands there. All the best for the rest of your pregnancy - not long at all now! Xx

@SEtwins thank you for the reassurance! We're having girls ☺️ were you exactly 32 weeks? Also how long after they suspected TTTS did they get them out? This is my anxiety at every scan now - will everything be okay or will it be go time?! I'm 30 weeks today and just so relieved to have made it this far!

@MilsCookie yes I was exactly 32 weeks, and the final decision to get them out was made 2 days before that. They were monitoring me for just under 2 weeks for suspected TAPS and then decided it was safer to get them out.

30 weeks is a huge milestone, you must be v pleased! Even if they come out now or in the ne t few weeks, they will be in v good hands. Let me know how you get on please and happy to help with any questions! X

@SEtwins I'm so worried about TAPS. I've done a lot of research about it and concerned our girls were borderline at my last scan (even though they didn't say anything). There was quite a big difference in their MCA doppler readings. What sort of things were they checking for signs of TAPS in your girls? You must be so relieved that they are okay and they're now home with you!

I'll definitely let you know how we get on 😊

@DestinyB

I have just found out I am having MCMA twins, by having a private scan, I am exactly 6 weeks (one of the twins is measuring a day behind), both with heartbeats.

The sonographer was very quick to tell me about all the risks of monochorionic twins, which has really worried me. She did say although they were in the same sac, they had implanted quite far apart, which was apparently a good thing?

She mentioned the pregnancy will be classed as high risk and the NHS highly monitor this type of pregnancy, also that the babies will need to be delivered early by Caesarean section at around 32 weeks to reduce complications?

I have tried to research the sort of antenatal extra care required for MCMA twins, however can only really find information from America.

I have my booking appointment with the midwife at the end of the month, I have read that many hospitals have never even come across these pregnancies and may not necessarily know how to deal with them? I live in London.

I would be really grateful if somebody could provide some information on the extra NHS care, such as what is to be expected, also what to mention to my midwife to ensure I do get the correct care?

Thank you!

They put the fear of god into you but I've had MCMA twins and they're fine. You're scanned every couple weeks and kept a closer eye on but I had mine by c section at just over 36 weeks.

@SEtwins the main thing they were looking for were the MCA velocity readings. Whilst the babies readings were sometimes over and under the median lines, they were mainly within the lines which was good. However, the doctors also picked up that even when they were within the lines, there was sometimes a difference of greater than 0.5, which is a potential sign. However, one-off scans can be misleading, so it’s important to see sustained worrying readings to conclusively determine TAPS. I was moved to twice weekly scans in the last couple of weeks and the consultant then decided it was safest to just deliver as 30+ weekers are pretty robust in the grand scheme of things and there was little to be gained by trying to intervene in-utero.

There’s an excellent TAPS support group on Facebook by the way. Lots of Dutch research on the subject which is referenced in the group if you want to read up. I printed off a couple of those papers and asked my consultant about them which she was happy to discuss.

@SEtwins yes I'm in that TAPS support group on Facebook! The one with Stephanie? She's great! She explained to me how to convert the Vmax readings to the MoM score which I've been doing since 20 weeks. Last week this is what they were:
29 weeks
Twin 1: Vmax 58.0cm/s (MoM 1.49)
Twin 2: Vmax 37.9cm/s (MoM 0.98)
Difference: 0.51

It was the difference of 0.51 that freaked me out. But they wrote on my notes 'no evidence of TAPS'... which confused me because I thought anything over 0.5 was taps. It was our first dodgy reading though. I've got another scan tomorrow so hopefully things will be ok 😕. Did they see any signs of TAPS when yours were born? Or was it just a couple of dodgy MCA readings? X

@MilsCookie yes the group with Stephanie! My hospital provided the MoM numbers so I didn’t have to do any conversions. It was only around the 29 week mark that I had a couple of “wonky” readings. But then it was a case of one scan with wonky readings and then the follow up scan being back to normal. I would push for twice weekly scans now if you can, so they can monitor it. There is a Dutch research paper on that Facebook group which goes into some detail about readings greater than 0.5 MoM and link to potential TAPS. Ask your consultant what they think about it - my consultant had been following that line of research and that is what prompted her to suggest twice weekly scans after the first wonky reading. And because the readings were sometimes normal and sometimes wonky, she discussed with another consultant and they both agreed it was safest for babies to be out.

I don’t think there were signs of TAPS when the babies were born (thankfully). In any case the initial potential diagnosis seems to have gone away during their time In NICU.

Let me know how your scan goes tomorrow - good luck! X

@SEtwins sounds like your hospital are a lot more on it than mine.... 🤦🏼‍♀️ I'll definitely discuss it with them at my scan tomorrow. And will let you know how it goes. When I called the hospital to speak to them I could only speak to a midwife and they just fobbed me off and I felt really patronised 😞

@MilsCookie yes def ask the consultant at your scan tomorrow. I found that the midwife and the sonographers etc don’t feel confident on TAPS (rightly so given it is all such an under researched area), so def bring it up with the consultant. In fact when my sonographer spotted the wonky readings at a scan, she didn’t want to speak to me about it but raised it with the consultant who then rang me later.

Unfortunately one of the perils of the NHS system where you don’t have direct access to the consultant all the time!

@SEtwins so it turned out last week's MCA readings were just slightly wonky. Phew! Today they were both elevated - MoMs were 1.58 and 1.55 - but the difference only 0.03 (as opposed to 0.51 last week!) Fluids/bladders/umbilical dopplers still looked okay so they're happy to keep them in at least another week. Really hope we make it to at least 32 weeks! How are you and your girls doing? x

@MilsCookie that’s great news!! Is your next scan next week then? I also had one or two readings that were over/under the lines but from what I understand, it is only consistently wonky readings that worries the doctors. Roll on week 31 😃

@SEtwins that's good to know, thank you! Yes my next scan is a week today 🙏🤞🏻 keeping everything crossed it's another positive one! Feel so relieved to have made it this far!

@MilsCookie how are you getting on lovely?

@SEtwins hey lovely! We're doing okay thank you - the babies are still hanging on in there and I can't quite believe it! I'm 32+4 now. They've scheduled my c section for 34+0 exactly so I really hope we make it to that point! I've got one more scan between now and then so fingers crossed 🤞🏻 it also turned out that that random worry about TAPS a few weeks ago was a one off and it all looks okay again now. How are you all getting on? Hope you're feeling more settled now and getting into the swing of things 😊

@MilsCookie fantastic news!! Not long now

All good here thank you - in the midst of a growth spurt/sleep regression with the girls who are feeding more frequently now! It’s a hard phase but on the plus side, it means they’re growing....So difficult to nail a feeding schedule though!!

@SEtwins sounds exhausting but I suppose they're going to have little phases like this!! How old are they now? So happy it's going well for you 😊 xx