Just been told my twins are "MCMA" and may not survive.

[MistyRuby]

I'd be so grateful if anyone out there has any advice or experiences to share regarding MCMA twins?...

I'm 10 weeks with identical twins and was told devastating news yesterday by the consultant that they are "MCMA"(Monochorionic-Monoamniotic), meaning that they are sharing a sac and a placenta.

Apparently this is extrememely rare, affecting 1 in 35,0000 pegnancies.

We have been told that there is a 50% chance that they will die before full term, or that the cords will tangle around their necks.

I have done some research online which suggests that other mums have had MCMA twins who have survived, as well as some mums who were diagnosed with MCMA only to then be told at a later scan that a thin dividing membrane wall had been found within the sac.

Any stories of survival or personal experience would really help me right now- thannk you.

No experience but wishing you and your babies all the best

thanks londonlottie and yorky.

I've read through the older thread and it did fill me with some hope.

I'm trying my best to stay positive, it's just such a worry because the consultant was so negative.

I was so excited to be told I was having twins...we have waited 5 years for this, having miscarried 5 times before. Now it feels like winnning the lottery and losing the ticket

Hi there, I am no expert, but I just wanted to let you know that earlier this year when I was in hospital with pregancy complications I met two woman pregnant with MCMA twins (the hospital is a big regional centre which looks after women from a huge area). Both sets of twins were born early, but are healthy and home now. Hope this helps and that everything goes well for you.

Hi rek21, thanks for taking the time to reply and share that with me- it does really help to hear stories like this. Helps me to try and stay positive - thanks again.

Oh Misty, I'm so sorry to hear about your miscarriages, I can see how devastating this news must seem. However, amazing things do happen, believe it or not, one of the sets of MCMA twins I mentioned were two of quads! What area do you live in?

I think the survival rates of MCMA twins has massively improved (I work in the health service but am no expert on this subject) . Presume you are under the NHS and not private - you are probably still reeling but push for the best available and if that means more scans etc then remember with the NHS them that shouts loudest gets the most.. not that I am suggesting you actually shout but check with your consultant if he specialises in twin pregnancies or even complicated pregnancies and if he does not ask him if he can refer to you to someone who does. I don't know where you are based but are you being seen at a regional centre or just the local hospital. Don't be afraid to ask you are entitled to a second opinion / specialist support and your consultant should understand that and support that also

Thanks rek21 and KT101 for your messages.
I am being seen at Cardiff UHW, so it's quite a big hospital.

The consultant that we saw this week said we should go back in 2 weeks for another scan, so I'm hopeful that they will be closely monitoring the situation, even though they have been so negative so far about the pregnancy progressing.

I will ask him if he specialises in twin pregnancies KT101, thanks for the advice.

Hi Mistruby,

Have you tried calling the Tamba twinline for advice?
the phone number is 0800 138 0509. They are open between 10am -1 and 7 -10pm

Good luck.

So sorry that you have this stress and uncertainty, MistyRuby. It must have come as a tremendous shock.

I've been at the Fetal Medicine Unit at UHW and have seen Mr Beattie - is he your consultant? In my experience, he is the most approachable medic I've ever come across and he really does go the extra mile to listen, give answers etc. So important in these circumstances that you have someone good in your corner.

Sorry not to be able to give concrete help, but just wanted to offer my support.

Hi - sorry to hear you're in such a difficult situation. Try the advice & support message board at twinsclub.co.uk - you are bound to find someone there who has been through aMCMA pregnancy. I've also heard that the unit run by fetal medicine expert Dr. Nicolaides at Kings College Hospital in South London is excellent - it is NHS run but they also have a private clinic. Have a look here. Hopefully your consultant can give you some good information about the options available. All the very best of luck!

I'm currently pregnant with twins and I'm in a mothers with twins club. Quite a few women have had mono mono twins, in fact I don't know any that have died. It's super high risk but that just means you have to be really closely monitored. Most gave birth early and did have complications but all survived. I wouldn't get too down with the 50% survival stats.

This happened to one of my friends, her twins are healthy, now 4 years old. She was extremely closely monitored in pregnancy and delivered by CS at 32 weeks.

Its very very rare and probably not something that your standard hospital will be experienced with. My friend was told by the original hospital she was booked in at (a big London teaching hospital) and they could not take responsibility for her.

She was then under the care of Mr Nicoldaides - if you are not sure your hospital is experienced enough to cope you should insist of being referred somewhere with more experience. With the NHS the more your shout etc the louder you are heard so be prepared to do some shouting.

Ah misty, you couldn't be much further from me, I was in addenbrookes hospital in Cambridge, but it sounds like you are at a big hospital anyway. I would agree with everyone who says that you need to be prepared to demand the right care, the lady who had quads had read up on everything to do with multiple births and knew all the right questions to ask. Knowledge is power IMO! Sounds like there are some good positive experiences here, I hope you are feeling a bit better.

I'm so sorry to hear that. I had an MCMA twin set with a singleton as well, so triplets.

I guess the hardest thing was not being able to enjoy the pregnancy like you would normally and won't feel you can plan for the babies. Your feelings about it will change (perhaps led by your hormones on some occasions!), but there is no getting away from the hard facts.

My advice is to be honest with family and friends. Some people will not be able to accept the risks and will be so positive that you may want to harm them(!), others will give you the support you need.

The odds of survival are getting better and there are things the doctors can do to help. They actually left mine completely alone because the single baby had a higher chance of survival and they didn't want to risk that.

The triplets are now eight months old and are worth all the trouble. We are all sending very good thoughts your way. x

Thanks so much everyone for your good wishes and helpful comments.

Thanks for sharing your experiences Sally1973- was really great to hear about your triplets- fantastic that they got here safely, although it must have been such a stressful pregnancy for you??! Your story has given me renewed hope.

I had one of my fortnightly scans yesterday, and all was well- they are developing well and are now 16 weeks....so so far, so good!!

Sally- Can I ask if they kept you in hospital after 27 weeks to monitor the triplets for risk of cord entanglement for the 2 mono babies?....

Also, can I ask how many weeks you were when you had your ceserean?

Thanks, Mistyx

Hi Misty

They did talk about that, but they reviewed it constantly. I was actually still working at 27 weeks - just a few mornings a week.

It really depends on the health of the mother. I was very healthy and my cervix was fine, so I was monitored daily at the hospital, which was better as I was able to go home in the evening.

I had a scare at 27 weeks and was taken into hospital (ending my mornings at work!)- I got a sickness bug which made me very ill, but then I was allowed home again.

At 30 weeks I started having contractions whilst in my daily check up so they kept me in. They managed to stop the labour and so I didn't have them until 32+2. It was actually planned for a CS at 32+3 but my son, Joe, decided he just couldn't wait.

They don't tend to keep MCMA twins in the womb after 34 weeks as things get a bit too serious then. You do of course need to prepare yourself for special care as I suspect they will be there for a while. Mine were in for 35 days, small but healthy so not as worrying as it could have been.

Happy for you to message me directly if you ever need to talk.

Sally x

Shangrila - I havent had twins but I have been scanned by Mr Beattie - and isnt he absolutely fantastic. Such a brilliant 'bed side' manner. Really explains / relates things well.

Misty - we go to the local twins group (we went from about 5 mths pg) and learnt loads. Mine weren't mono/mono but a set there were and all was well they were delvered early by cs.

Wishing you loads to good health for you and your babies (twins are great )

Thanks Sally- has been really helpful hearing from you again, such a comfort to find someone else who has been thru the same thing.

Thanks too oooggs- I shall have to see about maybed finding a twins group near me.

Misty x

Hi MistyRuby, im in the same position as you were when you posted this post im 16 weeks pregnant with mc/ma twins and would desperatly like to talk to someone who has been through it. Obviously i apprechiate that you wrote this post in 2009 so im sure you have had your babies by now. Our consultant has told us about the risks an the rarity of these type of twins so i am very scared for the safety of the babies. Ive joined so many forums and not had luck of speakig to anyone going or gone through the same thing. Would love to hear from you, i realise its a long shot but hey ho. Thanks. Hayley x

Hi Hayley,

My closest friends has momo twins. She had a stressful pregnancy - she bled often and her waters went at 31 weeks - but had the twins after lots of monitoring at a few days past 35 weeks. They are coming up to their first birthday now and are gorgeous happy boys.

Thank you so much for your reply, that does help. I think because its so rare there isnt much to research which isnt putting me at ease. X

Hayley, have you joined Tamba? My twins are MCDA but I remember reading a few threads on momo twins there. They also have twinline who may be able to help?

hayley You might have more responses on the Multiples Topic. A lot of twin/triplet mums might not notice this post in pregnancy. It's maybe worth posting there?

Congratulations on your pregnacy and I hope someone more knowledgeable might come along and answer your questions