Monoamniotic/monochorionic twins?

[BibiThree]

This is what I'm having (sharing a sac, sharing a placenta) and have read some frightening statistics regarding mortality.

Does anyone have any experience of this? I'd love to hear some positive stories or any experiences really.

Thanks

[Kaz101]

Have Identical twin boys who were monochorionic and monoamniotic. They are nine now, both really bright, lovely boys. Doesn't have to be bad news so try not to worry too much (hard I know, wish I'd taken my own advice at the time !

[BibiThree]

I've had an awful weekend believing the worst was inevitable. Rang my midwife in tears this morning asking for another scan before 20 weeks to determine whether they were definately monoamniotic or not, and she just said no, the hospital won't do that. I explained the state I'd been in and how I don't think I can go another 9 weeks not knowing if I was worrying unnecessarily but I was basically told not to worry and just get on with it.

I know nothing can be done before 24 weeks should something bad happen, but I feel completely on my own with this one. I asked could I speak with the consultant or someone just so I can ask some questions and was told I won't see him before 24 weeks either.

Am I over-reacting to this or not? Having read that this type of twin pg only has a 50% chance of survival has me in floods - but the midwife seems to think I'm over reacting.

[Kaz101]

I'd never read that about the 50% chance of survival... and I'm a born worrier !! My twins had twin/twin syndrome; is that what you're so worried about? If you want to email me I'd be happy to chat privately if I can be of any help. I had scans every two weeks and every week for the last 8 weeks (born at 32 weeks) or so, so I think you should press for more info/advice.

[lulumama]

this thread might help x shame midwife dismiessed your fears, rather than try to put your mind at rest x

[BibiThree]

I'm more worried about cord entanglement or compression, and more than one site I've been on mentions the 50% mortality/survival rate. My midwife seems blissfully unconcerned and I don't know if that's down to:
a. ignorance about the condition
b. not being able to do anything until the babies are viable (horrible word) anyway or
c. her just thinking I'm an uber-paranoid attention seeker who;s lost one baby and is terrified of losing another (the last part of that is true).

[sandyballs]

Try not to worry, and stop reading about it on the internet!! Easier said than done I know.

Not quite the same because my twins are non identical and therefore had separate sacs/placentas, but I do remember reading horror stories of twin pregnancies and worrying an awful lot until they were born. Didn't help that after the first scan they scrawl "HIGH RISK" across your folder does it.

I also miscarried before I became pregnant with my twins so I do understand your worries. I was convinced it would happen again but my girls are almost 6 now and an absolute joy (most of the time ). Best of luck and stop reading!!

[Leoladyofleisure]

Hello Bibi, I really feel for you and understand how you are feeling. I believed that my babies were MCMA up until about 20 weeks. But a more powerful scan showed that the division in the amniotic sac is just very, very faint. Most people who are told their babies are MA find that the babies are not MA, it is very, very rare. When you have the next scan make sure they look at the umbilical cords to see if they are tangled at all (this is what causes the greatest risk, higher risk than TTTS), if they are not, or the scanner you are having isn't good enough to show it then get a more poweful scan done somewhere else as it probably means they are not MA.
Make sure you are seen by a hospital that has experience with twins.

How about having a scan done privately? I am sure someone on here can tell you where you can get it done. it would be very much worth it to put your mind at risk or get a second opinion on what your care should be if they really are MA.

I think if they really are MA you should be having scans every 2 weeks already and should be seeing a consultant. I don't think you are overreacting at all and I think its most likely that your midwife has no idea about this type of pregnancy (the doctor that originally told me mine were MA also didn't have a clue). I have also read about the 50% chance thing.

[glamourbadger]

Hi BibiThree

I was also told my twins were MA for the first two scans as they couldn't see the dividing membrane. At the 20 week scan they announced the membrane was there - really casually like announcing the baby has legs and a head . I've done a lot of reading since and discovered this happens quite regularly.

I think you just have to get pushy and demand to see a consultant. No-one seemed bothered initially but once I was in the system the hospital really looked after me with lots of scans.

[BibiThree]

There's a contact number for some head of midwifery for the area in my notes, I might give them a ring and see what they say.

I really have v little faith in our local midwives after my pg with dd, when every single question I asked them was answered with:
a. every pregnancy is different, or
b. it's just one of those things, or
c. i've never heard of that.

[breadandroses]

Hi Bibithree,
not got a lot of advice to offer but am in a similar boat to you- found out I was expecting twins at 14 week scan a couple of weeks ago- when the sonographer had scraped me down from the ceiling she did explain what she thought they were, but I honestly didn't take it all in. I did go to a talk at the multiple birth foundation at Queen Charlotte's hospital, but that made me worry even more as the 5 mums of twins who were there to answer our questions had all had caesareans, so of course noe I'm thinking there's no way thy're going to let me birth these babies naturally. I have a feeling my twins will be the separate non-identical kind, but still have a million questions and worries (sorry for digression). Anyway, can highly recommend calling the MBF on 020 8383 3519 (they are online also www.multiplebirths.org.uk)

[Leoladyofleisure]

Breadandroses, congratulations on the pregnancy! I remeber the feeling well of being told I am having twins !

Come and join us on the \link{http://www.mumsnet.com/Talk?topicid=1216&threadid=264775&stamp=070129230333 thread\multiples} thread. There are lots (I think most) of mothers there have given birth to their twins naturally. CS is definitely not a must. Did the sonographer not tell you if you have one or 2 placentas?

[Leoladyofleisure]

\link{http://www.mumsnet.com/Talk?topicid=1216&threadid=264775&stamp=070129230333 thread\multiples}

What is wrong with my link???? Anyway, the thread is titled "D'y ever wonder what Paolo would look like in my shower?" and is the one where we chat regularly.

[Leoladyofleisure]

Multiples

!

[throckenholt]

I haven't read the whole thread yet - but ...

I am guessing you are about 11-12 weeks - have just found out in the dating scan ? At that stage it is often pretty difficult to see the dividing membrane between id twins - this happened with me - for a few weeks we were not sure if they were mono or di amniotic. At about 14 weeks they finally managed to see the dividing membrane between them - which was a huge relief.

It is a scary time - keep faith and believe it will be ok.

As far as routine scans - pretty much id twins should be considered high risk in terms of minitoring and should have at least fortnightly scans to monitor for things like TTTS - which can show up as early as 16-17 weeks (I was lucky and we had no signs of it at all). Mono/mono twins are even more rsiky as you have found out - and should be monitored at least as often as fortnightly (according to my consultant who was a twin speciallist). I would definitely go back to your midwife and say you are not satisfied with the no scan until 20 weeks - it is just not proper care - tell them you want to be allocated to a twin specialist - and if they can't provide that then get them to refer you to another hospital that can.

Where are you based?

[throckenholt]

also - did they mention having a nuchal fold scan to check for downs ? They can't do the normal blood tests with id twins so tend to offer the muchal fold instead - and if I remember rightly it has to be done before 13-14 weeks.

[glamourbadger]

I had a similar experience with my local midwives who fobbed me off for a good month.

The only way I got the hospital to take notice of me was to pitch up. I took the day off work, turned up at Fetal Medicine and explained I had a high risk twin pregnancy and was really worried that I wasn't receiving the care I needed (a few tears don't go astray here!). They booked me in to see a consultant and from there I had scans every two weeks. Would recommend a similar course of action!

[katedan]

Hi sorry have not had a chance to read whole thread so apologies if this makes no sense now. I was diagnosed at 7 weeks with monoamniotic twins. I was given very little information except two babies sharing one sac and no membrane, very scary to llok up on the internet but lots of babies have survived. I think there is about 60% survival rates in UK, higher in the states. Anyway most cases are misdiagnosed as mine was and at 12 weeks a membrane was found by internal scan 9 still not visage externally at this point!) anyway I now have 9 week old health baby girls. You need a follow up scan asap to put your mind at rest and find out the facts.

[throckenholt]

so the concensus from this thread is that if you are told they are mono amniotic in an early scan treat it with healthy scepticism. In fact it is often practically impossible to see the dividing membrane in early scans - but that doesn't mean it isn't there.

So maybe the doctors should stop diagnosing at that stage - just tell us they are identical and there is a very slim chance of being the very rare mono amniotic twins. It is scary enough having an id twin pregnancy without the spectre of cord entanglement to scare us witless.

[BibiThree]

I've got an appointment to see a consultant at the hospital this afternoon. I rang the midwife supervisor and was going tos ee her but she rang me back and said the consultant had a clinic this monrning and I could attend. I don't want to tell tales on my midwife, but I don't believe she's 100% clued up on momo twins and just want to make sure we're getting the level of care we should.

I could come away with no more info, I could be pleasantly surprised, we'll see. I hope the latter is true though.

Also, did anyone get offerd a nuchal fold scan in palce of the downs blood test? I asked about this before I found out about twins and was told I'd have to go private.

Thanks everyone.

[throckenholt]

I definitely got one with my twins - didn't have to go private. It is the only thing they can use with twins because the blood test statistics are designed for singletons.

Hope you get on well today - ask lots of questions and make sure the consultant knows his stuff. If you really want to see if he is on the ball ask about AAA arterio-aretial anastemoses (I think) - they are a connection of the blood vessels in the placenta - and if you have the right one it pretty much precents TTTS.

Fingers crossed for you.

[Leoladyofleisure]

That is great news Bibi!

there is a website/chatroom which gives an overview of what it means to have MA twins. I wouldn't recommmend you read any of the chat for the time being though, but the overview info they give is good. Read the letter of Introduction followed by the Welcome page. If you have time have some questions ready to check if your consultant knows what he is talking about. Ask about his experience with twins and this type of pregnancy. Ask about your care through pregnancy. Insist on another scan to see if the cords are twisted or not.

www.monoamniotic.org/

Good luck, I am very much hoping for you that the news today is good.

I can't help you with the question about nuchal fold scan as I don't live in the UK, but if they don't agree demand and insist.

[BibiThree]

So after waiting for 3 hours at the antenatal clinic, I saw a Dr becuase the consultant had to rush off to a meeting - she knew a lot more about the problem than anyone else I've spokent o so far and offered to scan me. In the end I had her and 2 sonographers int he room and they all had a go at trying to find a membrane between the babies and agreed there wasn't one.

The consultant was called back urgently to see a woman who was also waiting so I finally got to see him instead of going back next week. He knew a bit about this condition too, explained TTTS and a few other scary complications about excess fluid around the babies etc and has got me a scan for 16 week and fortnightly thereafter.

Even though the worst-case diagnosis was confirmed, I feel a little better that I am more sure of what I'm dealing with, and that I'm not just a crazy over paranoid loon.

I'm really glad of allyour advice and help, and proud of myself that I didn't just accept what the midwife said. I felt bad for going over her head when she turned up at antenatal clinic and saw me, but I got a phonecall from her after I left asking how I was and what was the plan of action, so I think she realised it was a bit more serious that she'd thought.

[Leoladyofleisure]

Bibi, it sounds as if you are in much better hands now. There is still hope that they will find a membrane at the next scan. Did you ask if the cords were twisted? If not (I have read) that its a good sign that the membrane is just not visible.

Take very good care of yourself, eat well and try to relax and not stress so the babies get strong as quickly as possible.

Well done for informing yourself and getting the attention you need.

L
xxx

[throckenholt]

that is better than before then - it sounds like they do know what they are doing.

I agree with Leo - there is still a good chance that there is a membrane between them - it is very hard to see in the early weeks and becomes more obvious later.

The excess fluid thing is usually all related to TTTS - it can start as early as 16 weeks (so it is good you have a scan booked for then). If it is early and severe then they can use a laser to seal the blood vessels connecting them, I have spoken to a few people where this was done and everything was fine. Another thing they sometimes do is amniotic reduction - where they remove some of the excess fluid which takes the pressure off both babies.

Still scary but stay positive - most identical twins are fine.

Also - you may want to wander over to www.twinsclub.co.uk - they have forums there and there are quite a few who have been through these type of things.

[MarsLady]

Congratulations BreadandRoses. Do come and join us on the multiples thread linked.

I was told that mine were MM at the earlier scans. Even after I knew they were in separate sacs another sonographer told me they were MM.

I hope it all turns out well for you.