Not good news - do not read if hormonal

[charleymouse]

Hi Ladies
Thanks for all your kind words on the "do you ever thread" I didn't want to post on there and spoil it for eveyone. I had my nuchal scan last night and discovered that twin 1 has a nuchal score of 3.8 and a risk of some form of chromosone problem of 1/3, he/she also has an exomphalos (hernia where his bowel & liver are outside his abdominal cavity).
Twin 2 has nuchal of 2.4 and appears visually okay at the moment and Downs risk of 1/ 204 and other trisonomy risk of 1/768.
I am going to see a consultant next week and hopefully T1 will only have this hernia which should be operable after birth. Obviously there may be other things as well but I am clinging to the 70% chance that they might not have chromosone problems.
Trying to be positive but may not be around much over next few days as have lots of people to see and things to get my head round. I am at my local EPU on Monday, seeing my midwife Tuesday/Wednesday and hopefully a consultant on Thursday.
I have to sit tight until 15 weeks to wait for an amniocentesis to check them both out. I have already been offered a termination of one or both babies but also advised to have an amnio to see if one is going to be viable. My best case at the moment is one healthy baby and one baby which will need an op after birth. Worst case is the poorly baby doesn't make it takes the healthy one with it.
Sorry if I spoil Saturday night just needed to get this off my chest.

[tutu100]

I'm so sorry for your situation charleymouse. fingers crossed for the best outcome you can get. please let us know how things go.

[NomDePlume]

Oh charleymouse, what a dilemma

I don't know anything about chromosonal problems or hernia ops either, I just wanted to you to know that I have read your thread and I'm thinking of you all and wishing you the very very best.

[ilovecaboose]

sorry sweetheart I don't have any experience of this, but I pray that everything goes ok for you.

15 weeks is a long time to wait .

[throckenholt]

charleymouse - that is not the sort of thing anyone wants to hear .


Are they id or fraternal ? The reason I ask - mine are id - and one had a nuchal fold measurement over 3 - can't remember exactly what it was now). We were pretty freaked by it - we all set for a termination - we already had a 12 month old baby - couldn't face the thought of disabled twins as well.

Anyway - the consultant suggested we wait and see what the 20 week scan showed. To cut a long story short - both were fine - and will be 4 in January.

I hope your story works out like mine - and all s/he needs is the hernia op.

[saggarmakersbottomknocker]

Couldn't read and not post. Hugs charley.

I know little about the chromosome stuff but when dd was in PICU for several weeks there were a couple of babies with exomphalos and they did great. I'll be hoping you get your best case scenario.

Will be thinking of you over the next few weeks.

[Fattymumma]

hun i am praying that the 15 week amnio will show that all is ok and that (although its a worry in itself) only the post birth op will be needed.

((hugs))

[throckenholt]

what I meant to say - because they are id - the consultant explained they could not have downs because one had a "normal" reading. He could not give a reason why one had a higher than normal measurement.

[frumpygrumpy]

charleymouse of course you can post on our other thread, its why we all gather there. And no way do you spoil anything for anyone, we help each other along the way, good, bad or somewhere inbetween. You do whatever helps honey.

I'm so sorry you have had such upsetting news. It will be hard to keep a clear head until you have something more definite to go on. Until then, you post whenever you can/need. I wish you all the best honey. Here's hoping for your best case scenario xxx.

[Judy1234]

Good luck. How dreadful. I refused tests on my twins. I didn't want to know if there were problems.
But from what you say the chances are there is no chromosome problem and presumably the liver and bowel could be sorted out.

[charleymouse]

Thanks so much, you lot are making me cry as you are so thoughtful.
They are not identical and T1 is measuring 54mm and T2 71mm so already the hernia is causing T1 slight growth problems.
I have been offered a CVS next week but can have an amnio the week after which will be less risky for T2 so we will wait for the amnio. If the amnio shows all is well (except hernia)we then have to get through the 20 week scan as this condition may be linked with heart problems I think - I am on information overload at the minute.
Hopefully all will be well with T2 and T1 will just need the op.
Thanks so much, just writing it out seems to help get my head round it.
Cheers

[Fattymumma]

hun right now all you need to do is try and stay as calm as you can. there is nothing you can do until the results of the amnio are in.

don't worry or panic about what the outcome might be or what might be related to this that or the other.

your head is probably spinnign right now and understandably so.

if it is any consolation at all i have 3 friens and a mum (yes mine) who all had scans that showed a positive for DS only for the amnio to show no problem at all.

so please dont allow yourself to get too far ahead just yet.

and sweetie you post wherever you like. (((hugs)))

[harrogatemum]

charleymouse I'm so sorry to hear you upset about this. And I would echo FG that you shouldnt feel worried about posting on the main multiples thread, we are all here for support, sometimes we are laughing together and sometimes we are crying. I personally feel that most of the ladies on the mulitples threads are like my best friends and I've never met them!

We are all here if you need us - and thinking of you. xxxx

[earlysbird]

Hi Charleymouse, sorry to hear about the scan, as others have said, its hard but I guess you just have to wait and see how it turns out. You know we are all here for you no matter what. Fingers crossed for best possible outcome anyway x

[largeginandtonic]

Oh Charleymouse poor you and your dh, it must be so hard. It's the not knowing that can sometimes be worse. At least when you have had the chat with the consultant and midwife you will know a bit more. The amnio will hopefully put your mind at rest, just remember to do whatever is best for you and your family and not what you may feel you are expected to do.

Please come and post on the multiple thread we are all there to support you if you want. Rest lots all this will exhaust you. Good luck and find us wherever and whenever you want.

[glamourbadger]

Hang in there charleymouse!

I went through a similar experience with my twins, now 7 months. Twin 2 had lots of complications and stopped growing and we eventually had to decide whether to deliver both the babies early or carry on to give Twin 1 a fighting chance. Crazy decision to be asked to make.

It's easier said than done but try not to worry until you have the facts - then you can sit down and think things through and do what is best for you. Good luck with the amniocentesis (not as bad as it sounds) - let us know how you get on. Lots of support here from twin mums if you need it!

[Overrunnerbean]

sorry to hear this Charleymouse, hope it works out for you and your babies. Please come and joing us on the other thread, its there to be there for people iyswim

[MKG]

Charleymouse,

I'm so sorry. The worst part is the waiting game. God doesn't give us anything we can't handle. You will get through all of this.

[lupins71]

hi hun

sorry to hear u r having a difficult time, i pray its a best case scenario for you, please keep us posted are all here as your virtual shoulders to cry on

huge hugs, lisa

[MarsLady]

Just found this Charleymouse.

Now as has been said... you can post anything on the do y'ever thread. That's why we are there!

But the most important thing is that you get all the facts my lovely. How easy it is to post.. just wait and see, and how hard it must be to do. I shall be praying for those wee twins of yours. And I'll be praying for you and yours. Just know that we are here. Virtual hand holding, hugs, kisses whatever you need babe. As HM says, we're like the best of friends on the multiples thread. We are there to laugh and cry and rejoice. I pray that we rejoice with you. (Besides, did you think we wouldn't find you babe? )

Charley.... I pray that you find peace tonight and whilst you wait.

Much love darling.

[Frenchsmallfry]

Charleymouse soooooooo sorry your having a tough time at the moment. Will be praying for your best case senario. We are all there to support you on the May thread too.

xxx hugs xxx

[leogaela]

Charleymouse, I'm really sorry that T1 is having problems. This is a really painful situation to be in . I will be thinking about you and hoping for the best case. Agree that you should get as much information as possible. I think that the Multiple Births Foundation is there to help you with things like this, I'm sure one of the other twin mums can give you more information on the MBF.
Big hugs.

[Juicylucythe2nd]

Thinking of you love. Hope all your appts go well this week and the amnio gives you good news next week.

Lots of

[pebblemum]

Charleymouse, so sorry to hear your news, i am keeping fingers crossed that everything turns out ok (best case scenario). I can only imagine what you and your Dh must be going through, just remember we are all here for you whether its on the multiple birth thread or the May one. Good luck at all your appointments over the coming weeks. Will be thinking of you all

[twelvedaysofchristmas]

Thinking of you Charleymouse. x

[jampots]

dd's friends sister had to have an operation to put all the stomach back inside after birth. She's 12 now and has just seen her surgeon about constructing a proper belly button. Fingers crossed for you charley x