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

(35 Posts)
MistyRuby Wed 09-Sep-09 10:42:37

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.

Emgolding Fri 11-Apr-14 17:46:20

Hi, I've MCMA twins & I was hoping for some advice or just hearing from some mothers who have been through this & knowing their experiences. Please post, you feel scared & alone. X

Emgolding Fri 11-Apr-14 17:43:02

Hi Hayley, how are you? Are your little ones ok? Did Misty ever get back to you? I'm doing exactly as you did a year ago searching the web for mums who've had MCMA twins which I am. Please contact, whatever your news. X

DanniMcEvoy Thu 23-May-13 16:39:08

HI, Congrats on having Twins.
I have 3 month old MCMA twin girls.
When I found out I was having twins I was so excited but then I was told about how high risk it was and all the different things that could go wrong...I was so scared. I'm only 19 and didn't have my family to support me.....BUT DONT WORRY the doctors tell you about all of it because they have to. This does not mean it's going to happen. My girls were born at 33weeks 5days, they spent 14 days in hospital and were home and healthy. I had no problems except the early labour, but as soon as they realised I was sent to have my c-section. I was made to spend 2 months in hospital before the birth having CTG monitoring at least 3 times a day. It was a real pain in butt, but at least I had the peace of mind that if there was any cord entanglement, or pre eclampsia or anything I was there...right where I needed to be. Weekly ultrasounds made things easier! As long as you remain healthy and be aware that you are more at risk of going into early labour, do as the doctors say and remember that you're the mother - if you think there is something wrong let the doctors know, and make sure they check you out. You Know Best about the Babies inside of YOU!
GOODLUCK

BikeRunSki Wed 04-Apr-12 18:13:57

Hi, a girl I work with had MCMA twins about a year ago. She was very closely monitored, scan every two weeks and had them by cs at 36 weeks. They were small, both under five pounds, but fine after a few days in SCBU. Now "caught up" in size and bouncing around with their big brother.

3under2 Wed 04-Apr-12 18:01:59

Hi, just thought I'd join this thread, I'm 13 weeks pregnant with momo twins. There really dosnt seem to be alot of info about it except alot of Internet pages saying only a 50% survival rate!! Is it really that bad sad My first was IVF so was over the moon to have fallen with twins naturally, such a horrid black cloud. A few words of experience would be great. Many thanks

VivaLeBeaver Tue 31-Jan-12 21:45:36

A friend has just had healthy McMa twins at 37 weeks. Had lots of scans but no problems.

silverangel Tue 31-Jan-12 21:39:27

Hayley, coincidentally a lady has just posted on TAMBA today re safe delivery of her momo twins at 32 weeks!

silverangel Tue 31-Jan-12 21:39:27

Hayley, coincidentally a lady has just posted on TAMBA today re safe delivery of her momo twins at 32 weeks!

minitoot Tue 31-Jan-12 15:14:33

I know nothing about this but just want to say my heart goes out to you. I hope everything ends well.

Chesticles Tue 31-Jan-12 13:25:36

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

silverangel Tue 31-Jan-12 10:58:31

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?

Hayleybishop Tue 31-Jan-12 10:09:16

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

eurochick Mon 30-Jan-12 11:45:32

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.

Hayleybishop Mon 30-Jan-12 10:32:49

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

MistyRuby Sun 01-Nov-09 13:16:11

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

oooggs Sat 31-Oct-09 20:44:35

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 smile)

peppapighastakenovermylife Sat 31-Oct-09 20:23:07

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.

Sally1973 Thu 29-Oct-09 14:52:34

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

MistyRuby Wed 21-Oct-09 12:02:43

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!! wink

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

Sally1973 Tue 22-Sep-09 15:59:55

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

rek21 Fri 11-Sep-09 19:39:46

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.

MumNWLondon Fri 11-Sep-09 14:27:59

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.

Trudi2009 Fri 11-Sep-09 04:43:32

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.

2to3 Thu 10-Sep-09 22:54:26

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!

shangrila Thu 10-Sep-09 12:41:19

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.

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