Twin pg - bad NT result for 1 twin - what next?

[Fulham1]

I'm 43 and have had 4 unexplained mcs. So was delighted to be spontananeously pg with non-identical twins. They don't do blood tests for twins, so had nuchal test which gave good (for my age) results of 1:150 T21 and 1:190 T13/18 for Twin 1, but very bad results of 1:2 T21 and 1:6 T13/18 for Twin 2. Next step can be CVS or amnio to confirm, each with 2% risk of mc (1% per twin). DH and I have always agreed we will not go full-term if chromosomal problems. But dilemma is to risk a healthy twin. My recurrent mc consultant has advised me that with my age and history, a successful pg in the future may be unlikely, but equally it is v likely that Twin 2 does have chromosomal problems. Has anyone else had a similar experience with twin pg, and what was your outcome?

Not quite the same situation for me, but very similar.

I fell pregnant with non identical twins, my husband and I are carriers for an auto recessive syndrome that causes progressive severe brain damage and an extremely short life expectancy (infancy).

I had an amnio with them and when the results were returned one twin (boy) was affected and one wasn't (girl).

I had a selective termination at 17 weeks and went on to give birth to DD at 38 weeks. I also had to give birth to DD's twin, although he was tiny due to my body reabsorbing a lot of the fluid etc.

I hope this is of use to you, I can try to answer if you have anything else I can help with.

Utmostly I wish you the best whichever route you choose to go down.

Thanks for responding, Starbree. Sorry to hear about your twin. I am meeting consultant next week to discuss options. I imagine we will go with CVS or amnio anyway, and discuss selective termination if results are bad. If so, it would be great to ask you more about it. Not something DH and I can discuss with anyone in RL. Can't even announce my pregnancy yet, as I need to absorb this bad shock before appearing happy!

Do you mind me asking how far along you are? (12ish weeks I am guessing?)

I know how you feel with regards to telling people - I was nearly 21 weeks pregnant before anyone other than my DH, DSIS, DM and DMIL knew. I waited until I had a check up scan on the remaining twin (DD) after the selective termination.

The consultant who performed both the amnio test (he preferred to do this rather than the cvs) and the resulting procedure said that there was a 2% chance of the amnio causing a miscarriage.

He also gave the same chances again for the remaining twin after the ST.

Am I right in understanding that no one knows either about your pregnancy, the fact that it's twins or the bad result you have had?

That must be awful for you. Especially coming out of the blue like that.

I hope I didn't give you too much information too quickly? I wasn't sure exactly what you wanted to know.

Look after yourself

Fulham, I had a termination for T21 back in 2008. At the time, I posted on a board in which one lady was pregnant with twins, one if which was diagnosed with T18. She would have preferred to terminate (at the time), but the risk to twin 2 was deemed too great as twin 1 was lying above twin 2. I went back on the thread last year just to see how the thread had got on as I'd never returned after I made the decision to terminate. Turns out that the lady, Deb, had posted an update of her babies birth and also her email ( [email protected] ) for anyone that may find themselves in her position and wanted to talk with someone who can relate.
I hope results for your twin 2 turn out okay, but in case they dont, and you are faced with the dilemma of terminating being too risky, I'm sure Deb would be more than pleased to share her experience with you.

Best of luck to you all xx

Starbree, I am 13 weeks - was hoping to share my great news with people this weekend A couple of friends do know, but nobody else. I won't be telling anyone until we decide what to do next. Another couple of weeks of sucking in my expanding belly!
Mishtabel, thanks for tip - I will take a look for that post.
Thanks so much for your concern and advice, ladies.

Sorry, I am only just able to get back.

I really feel for you Fulham1 and as I said before if I can help you in any other way, just let me know.

I so hope that you get on well at the consultants this week and will be thinking of you.

So sorry to hear that you are in this position. The same thing happened to us. We had nuchal scan results for Downs of 1:2 for twin 2 and 1:600 for twin 1. I'm 42.

We felt fortunate as we were offered immediate cvs and got the results 2 days later confirming one twin had Downs. We decided to have a selective reduction which was performed 6 days after the nuchal when I was 13 weeks.

There was (and still is) a risk to the healthy twin, but we both agreed that this was the only option for us. I am now 19 weeks and the risk reduces with each passing day in which our remaining baby is ok, though it will always be considered a high risk pregnancy.

I don't often post and don't look here very often, but wanted to let you know that others had been through similar experiences. Also ARC www.arc-uk.org/ have been very helpful and supportive as I didn't want to tell our friends/family of our decision. I did a lot of crying on the phone to them in the early days of our diagnosis.

Best wishes with whatever you decide.

Hi

I am reading with interest your very relevant stories that I myself are currently undergoing too during this very emotional time for myself and my husband.

I am pregnant with identical twins and now at 18 weeks today, (Wednesday 22nd Sept). Only on Friday the 17th I discovered that one of my little twins has Spina Bifida and brain development problems.

After an incredibly distraught weekend, we are now considering selective termination of one of the twins.

This is a harrowing decision for us, as I am sure it has been for anyone in our situation, to have to make but we believe that the sick twin will not have a good quality of life.

We therefore want to ensure that whoever performs this procedure is completely qualified, professional and is very skilled in this procedure, perhaps with a multi birth specialism. Although we know it carries a MC risk, regardless of who performs it.

I was really looking for a recommendation of who you know is well versed in this area?

I am seeing my consultant again later, who will of course make his own recommendations but we are not from the London area and we will have to travel to London for this procedure and I was wondering where was the best hospital and perhaps who the consultants are?

I would greatly appreciate hearing from you, your help would be immensely valuable at this terrible time.

Warm regards

Royale1 - I am so sorry for the situation you find yourself in. There is a good clinic at Queen Charlottes but I thought you might also want to speak to/get advice from the FMC. I found them wonderful (a slightly different situation to yours though). I think you might also want to get in touch with ARC (you can ring them and ask their advice) and post on their message board as there will be a number of mums there who will have had the same experience.

www.fetalmedicine.com/fmc/

www.arc-uk.org/

Hi. I am pregnant with twins and am deciding whether or not to do the amnio. What are the risks with selective termination? What is the process? My ratio is 1:360 for both, but I'm awaiting my 15 week Nuchal part two test results.

Thanks,
Lauren

Hi Lauren, I made the very difficult decision recently to have a selective termination after one of my twins was found to have Down's syndrome and heart abnormalities. It wasn't a decision we took lightly but for us it was the right thing to do.

The main risk of a selective termination is that you will lose the healthy twin as well. My procedure was done by the best in the business (Kypros Nicolaides at FMC/Kings) and he told me that the risk of losing the healthy twin was about 5-8%. Sorry for being graphic, but the process basically is that, using the ultrasound as a guide, they put a long needle into the heart of the baby and inject potassium chloride, which stops the heart. It's quick and painless for the affected fetus. Over time the fetus is partially absorbed by the body.

With odds of 1:360, I'm not sure I would have gone ahead with the CVS/amnio, but of course it's a personal choice (my odds were so much higher -- 1:2 and 1:26).

Hope things work out for you.

Hi there

I just wanted to post to say that I had a selective termination of one twin in February this year after one of them was diagnosed with T18 after having a CVS test - Edward's syndrome. I went to the FMC in Harley Street and Professor Nicolaides who was brilliant. It's not as expensive as you might imagine either. In my case, the decision was an obvious one because I was told the baby would not live past birth and the longer it was before we terminated, the more chance there was of the poorly baby dying in the womb and destabilising the other pregnancy. But it doesn't make it any less heartbreaking. Professor Nicolaides is literally the best in the world so you couldn't be in better hands and so far, the other baby appears to be fine and growing well. Someone even told me he had never lost a baby after he had done a CVS but I don't know if that's true. I am at week 19 now so fingers crossed.

Hi skmore, sorry you had to go through this too. It was hardest thing I've ever been through. Great that your pregnancy is progressing so well. I'm 26 weeks now and, touch wood, everything is going fine. Best of luck with the rest of your pregnancy.

Bump x

Hi yaya 70
An also carrying twins and planning for reduction.my Sinologist in India gave me his dr (Kypros Nicolaides at FMC/Kings hospital name. As in India nobody does reduction without any Serious reason.am now almost 14 week and getting scared of risk involved in it.how to contact dr kypros as I m trying to contact him from last week. I am very depressed as I ve already have 2 girls and in India no 1 tell the sex of a baby.in kings hospital till what week they do reduction? Do they tell u gender of a baby before reduction? Plz help me out.

Hi Trishala, you can arrange an appointment with Prof Nicolaides via the Fetal Medicine Centre: www.fetalmedicine.com/fmc/contact/

I'm not sure from your post whether there's a problem with one of the babies or if you want to reduce to a singleton for personal reasons. If this is the case, then I'm not sure that they would tell you the sex of the babies.

Hello
Has anybody experienced brown watery discharge right after selective fetus reduction.i ve started brown watery discharge after 2 hours of reduction. Am very scared.

Thanx yaya I tried to contact dr kypros but in vain.

I wish I'd thought to look at this thread when I had to make the tough decision that you're discussing here. We went ahead and terminated twin2 whose results came back as having Down's syndrome. It was a hard time, but I believe it was the best thing to do. Twin1 has gone on to be a healthy beautiful baby.

Hi. I'm Em.
I am the daughter of a mother who, way back at the beginning of selective reduction, chose that option when my twin was found to have Downs. We were IVF babies to begin with. Mum was 38 and had had an operation on some abnormal cervical tissue early in the pregnancy. Then she had the reduction performed. I was delivered at 29 weeks. I was tiny, but absolutely fine. I could breathe and regulate my temperature and I am now a thriving young woman with enough lung power to swim an entire length of the pool (since I was 7) and am getting a Bachelor of Fine Arts. Everything turned out just fine over here.
Whatever you choose to do will be the right thing for you.
I hope this helps someone, somewhere. Everyone is different, but we are a happy loving family as we are.

I would really appreciate advice on recommended hospitals / clinics in UK for selective reduction. I've read about Kings Hospital and am awaiting a callback but where else could we go....?
We have an abnormality with one of our twins and made the agonising decision that selective reduction is best solution for us and prospects of the currently healthy twin. We live in Ireland though so need to travel to UK which is further adding to the agony of the decision and process ahead....thanks for your advice.