Amniocentesis with identical twins

[MilsCookie]

Hi there,

I'm currently 18+5 weeks pregnant with identical mo/di twins and have been offered amniocentesis due to my twin b having a single umbilical artery and absent ductus venosus. These two things can be soft markers for a genetic abnormality. Twin b also has early sIUGR (22% size discordance currently).

I was told all this information at 16 weeks and initially declined the amniocentesis due to the 1-2% risk of miscarriage. But obviously it's all going round in my head and we might consider having the test after the 20 week anomaly scan.

Has anyone had an amniocentesis with twins? I suppose I'm looking for success stories and maybe some reassurance as it's such a hard time. I had a mmc at 12 weeks in November last year so I am terrified that I might also lose these babies 😔.

Thanks in advance.

A very difficult decision for you. I guess fundamentally you need to decide if you would take any action based on findings from an amino.

Thanks for your reply @Sussexmidwife. It depends on how severe any genetic disorder would be as to whether we would TFMR. If the babies were going to be okay and could have surgery to 'fix' any problem(s) then we wouldn't terminate. But if it was going to a severe disability and the babies would be very sick then we'd be more likely to TFMR 😔 although it is horrendous to think about.

If you would terminate then I would definitely find out sooner rather than later. If you wouldn’t, then you could wait until after the 20 week scan.

Have you been seen by a specialist fetal medicine consultant?

@Sussexmidwife yes I'm being seen by a specialist at the twin clinic at my hospital.

Thank you @PotteringAlong. It's just trying to weigh up the odds of 1/10 risk of there actually being a genetic disorder, and the 1-2% miscarriage risk with the amnio 😞 we thought we'd wait until the 20 week scan as they said they might be able to see more then.

If it helps, I had a CVS after horrible combined test results due to my pregnancy hormones. That was done around week 13. It showed no abnormalities and my baby is now almost 2, very healthy 💚 wishing you luck and giving a virtual handhold x

@bornninthe80s thank you so much for the reassurance 😊 it's a stressful time. I'm so pleased for you that everything was all okay with your little one. Gives me lots of hope!

Would a harmony or other non invasive blood test be an option instead. I'm not an expert so don't know if it would test for the conditions you are concerned about but might be worth looking into. You would probably have to pay yourself but if you can afford it it's worth it for the reduced risk.

Hello no good news story here but some shared experience. I had a amino with fraternal twins at 21 weeks then sadly went onto tfmr one at about 28 weeks. There's risk of labour with both procedures but I had no issues with this.

if I were in your situation I'd wait till 20 wk scan and see what comes of that. Don't feel the urge to rush. Take each step as it comes.

I have my fingers crossed for you that everything will be okay

Thank you @Brunilde. I've looked into that but it looks like it only tests for downs, Edwards and pataus syndromes which I got very low risk results for at my 12 week combined screening test. So I'm assuming if there is a genetic abnormality, it is something else? I might be wrong though.

I'm so sorry @RooMama, that must have been an absolutely awful experience 💐. Do you mind if I ask why you TFMR? Thank you for your advice. I agree, we don't want to rush into anything.

I had one after IVF and there were different pricing options depending on what we wanted to test for. I've just had a look at my paperwork. It was called the prenatal safe test. If you Google it the website lists what they test for.

My son's diagnosis was grey but his particular abnormalities looked on the severe side. He would have been physically and mentally disabled, would have struggled to feed himself, mobility would have been fairly poor possibly immobile. Between 20-27 weeks we went back and forth a lot but at 27 weeks I started being at risk of early labour due to his abnormalities- increased fluid in his sac. I was told it was time for tfmr or to prepare for very premature twins. We made the choice to have one healthy baby instead of two premature ones one of whom was very poorly. I spent a lot of time talking with family and friends who have siblings with disabilities. There was no doubt the other twin would have been responsible for him after we were gone if he'd lived that long and we wanted more for her. We also would not have forgiven ourselves if through premature delivery she ended up with developmental problems too. It was an absolutely horrendous decision but it was the right one.

Hey, congrats on the twin pregnancy and sorry you find yourself in this difficult situation.

A few years ago I was pregnant with ID twins (they are perfectly healthy toddlers now!) and they had similar markers for a generic anomaly. They also had a degree of TTTS, and one had sIUGR. It was a fucking mess basically and a horrendous time. After initially declining we had an amnio on one twin at 20 weeks. The risk of miscarriage put me off initially but actually, at our particular clinic the risk was much lower. And either way, I would not have coped or been able to afford two severely disabled babies so there wasn’t much of a choice for me. Had the amnio, all clear...!!! Rocky remaining pregnancy with very preterm birth (due to the sIUGR) but as I said they are all good now. What a horrendous time it was, but oh my god is it worth it...! ID twins are just about the most special thing in the whole wide world.

Hang on in there, and feel free to PM if you have questions. Good luck to you xxx

I had a late amnio with my twins at 29 weeks. My t2 has several markers which were seen at 12 wk scan and more markers later on. He was small for GA, had a high NT measurement (6.1mm), short long bones and also diagnosed with bilateral talipes (clubfoot) at 15w. We had NIPT at 14w as our screening gave the risk of 1:14 for Down Syndrome. The NIPT came back as very low risk but due to other complications we decided to have a late amnio at 29 weeks. This came back negative. So despite all for the markers seen, save for the clubfoot which was diagnosed early and is now corrected, there is nothing wrong with either of the twins and they're now 3.5y and perfectly healthy. I hope that gives you some positivity

@RooMama I'm so sorry you had to make that horrendous decision. For what it's worth, I would have done the same. Hope you're all okay now and your daughter is thriving! x

@DifficultSituation999 gosh that all sounds so horribly stressful but I'm so glad it was a positive outcome in the end! Do you mind me asking what were the genetic markers on your twin? And at what stage did you develop ttts? I'm terrified of developing that as well as the sIUGR! Thank you for the kind offer, I might send you a message if I have any questions 😊 x

@doublethecuddlestwinmum what a stressful journey you went on. It does give me a lot of comfort to see that people have gone through similar situations and have had positive outcomes! Thank you for sharing your story, I'm so glad to hear your little one is doing well now! X

I am in a similar position, but with fraternal twins. One of our twins has large nuchal fold with no nasal bone visible, putting one twin at very high risk of chromosomal abnormalities. It’s a horrible stressful time between the waiting for results and decisions xx

@Simz01 it's horrible isn't it. How many weeks are you? I'm 22+1 now and we've decided against the amniocentesis and what will be will be xx

@MilsCookie, it is, i hate the waiting and anxiety.

We did the CVS and it came back clear for the first set of results - Trisomy 13, 18, 21. They will do a hear scan in a few weeks.

I am relieved. Just still anxious that there is no nasal bone visible.

I hope you are doing well x

@Simz01 that's brilliant news! We had a heart scan at 20 weeks and both hearts looked absolutely fine. Hopefully the nasal bone will be clear on your next scan. X

@MilsCookie that’s great news re your scan, so pleased for you xx

@MilsCookie how are you doing x

Hi @Simz01 we're okay thank you. 28+1 now and hoping to make it to 32-34 weeks with these twins! How are you? How did the heart scan go? X

@MilsCookie ah I am so glad to hear - time goes quickly (when we are not waiting for results and such things!)

I am ok thanks. The cardiologist said it would be better to do heart scan at 20 weeks so get a better view, so it is now next week. I am just 19 weeks. Therefore, have both the 20 week scan and that next week - keeping my fingers crossed, but trying not too think about it too much

@Simz01 I know what you mean! I had my 20 week anomaly scan and heart scan at the same time too (well on the same day - they were in different departments). Will keep everything crossed for you that it all goes well. Not too much longer to wait now! x

I just wanted to update this thread in case anyone reads it in the future. I declined amniocentesis in the end and my twin girls were born at 34 weeks completely healthy 😊 they're now 12 weeks old and thriving!