Late selective termination of one twin at 32 weeks

[lolea]

hello, this is my first post on MN so hopefully I'm asking this in the right place!

I'm currently 18 weeks preg with non-identiical Dichorionic/Diamniotic twins, with one of them diagnosed a couple of weeks ago with a chromosomal problem, a kidney issue and v small size (not even on the percentile chart). The other is fine. we've been through hell processing it all - I wouldn't wish this scenario on my worst enemy.

Our local hospital has offered to do a termination of the unhealthy twin but insists it needs to be done straightaway. We had a second opinion from Prof Nicholaides at the Fetal Medicine Centre earlier this week and his opinion is that a termination now could risk the healthy twin and therefore his advice is to wait until 32 weeks to terminate the unhealthy twin the as the risk to the other is minimal.

I know Prof Nicholaides is the best in the business so I'm inclined to go with his advice, plus he'll take us on as patients at kings for the full monitoring in the lead up, BUT I'm terrified about the realities of terminating one twin so late in the pregnancy and having to give birth to a stillborn (as well as hopefully a healthy twin). I'm worried that I won't be able to go through with the termination procedure and am having nightmares about running away from the operating theatre.

Has anyone else been through a similar procedure, in particular, a selective termination at c.32 weeks? I'd really appreciate any guidance/insight/regrets etc.

We will have to make a decision in the next week or so, I just want to make sure it's one I can live with afterwards.

Thanks in advance...

What happens if you don't go through with it?

I think I'd want to go with the option that minimised suffering.

I'm so sorry you're having to go through this.

Thanks for your reply Mouse. If I don’t go through with it then we would have a disabled child who would likely require a number of operations straightaway and would never be able to live independently.

I have two children already (aged 5 and 3) and feel like the burden of a disabled sibling would be as much on them as it would be on my husband and I. And moreover, it’s just not the life we would choose for any of our children (either the affected twin or my current children). It’s a truly heartbreaking and devastating decision and I appreciate and respect people that wouldn't make the same choice, but it’s the right decision for us. Like you suggest I’m trying to minimise the suffering all round.

It’s just getting to a point of being at peace with that decision and living in fear of the inevitable guilt I’ll feel for the rest of my life. It’s so tough.

Late termination just seems so tough to get my mind around. It’s genuinely horiffic!

No experience or advice but huge

Does not terminating endanger the healthier twin?

How big is the risk to the healthy twin of you do it now? I couldn't wait tbh. I'd get more and more attached to both twins and I wouldn't be able to go through with it. What a truly awful situation. I had a terminal at 14 weeks for Edwards syndrome and it still hurts

Oh goodness, 32 weeks is an actual baby capable of surviving. I really couldn't do this personally. I think anyone would find it incredibly difficult at that stage.

I would say do it earlier but then you risk a late miscarriage or decide to keep the disabled child.

Only you can decide which is the lesser of the two evils for you and your family. Which would be worse now and which would be worse in the long term? What matters more?

I'm so sorry you are in this situation. Until someone has a disabled child they often have little idea of the extent of the strain placed on their family. Let alone all of the hidden discrimination and the difficulty accessing childcare. Equally, grief and loss are very difficult to handle too.

Good luck with whatever you decide x

No experience, just wanted to say I'm so sorry, that sounds so hard.

The hospital that said to do it ASAP, was it any kind of specialist? Did you have confidence in them? Did they specify how much of a risk it would be to the healthy twin?

As for he termination, would you have to deliver the baby, or would it be a c - section?

I'm so sorry; hopefully somebody more knowledgeable will have some good info/advice for you xx

I’m so sorry you are going through this. I cannot imagine how horrendous it would be. What I would say though, is that Prof Nicolaides is incredible and I would take his advice in any situation like this. You couldn’t have a better doctor in the world looking after you and your babies.

Could you go to term and just opt for no active treatment for the poorly twin?

I'm so sorry you are in this position OP. An awful decision for any mother to make. I think you need some independent counselling to make this decision, my biggest worry would be termination at 32 weeks being traumatic for you. Would you be delivering both at the same time?

I have no experience of this but I just wanted to say I wish you the best in whatever you decide.

Is the unhealthy twin likely to continue to grow? Just thinking that I would try to take the expert's advice but if you will have the prospect of delivering a full term size baby.....that's hard to come around to.

I have no wisdom or experience to share, I just wanted to say that I wish you & your family well, & hope you can find support on here.

Hi Lolea, I was in a very similar situation last year with my twins. I had Di di twins and at my 20 week scan one was half the size of the other and had kidney abnormalities. My pregnancy was very closely monitored and the smaller twin’s growth continued to lag behind and eventually stopped. Then his fluid level reduced and he died at 29 weeks. I delivered his healthy sister after a spontaneous labour at 36 weeks and he had become a ‘fetus papyraceous’ and was embedded in the placenta. It was very sad, but letting nature take its course was the least bad option for us. My little girl turns one in three weeks and is perfect. I hope you are able to reach a decision you are comfortable with, and wish you all the best for a good outcome for your healthy twin.

No advice @lolea but I just wanted to say that I am so sorry you are going through this and hope you get all the support you all need

I think, you seem to have made your heartbreaking decision to terminate the poorly twin and with good reasons that you can live with. IMO you need to give the healthy one the best possible chance. Delivering a stillborn baby at the same time as a healthy one will be awful, but if you have a termination now and it affects the healthy twin, how would you feel living with that? There’s no right answer is there? Only you can decide . My heart goes out to you.

So sorry to hear this.

Is there the option of palliative care for the unwell twin once it's born? Or would continuing with both babies in pregnancy risk the healthy twin?
I'm not sure what the kindest or 'easiest' option is - but you are right in that you have your whole family to consider and none of the options is wrong xx

My worry would be that getting to 32 weeks might mean I was far more emotionally affected and possibly end up developing a mental illness as a result. The termination itself will also be harder on you physically with less time to recover before labour.

Do you know the absolute and relative risks to both you and the healthy twin from each option?

I think I would make the same decision as you with regards to aiming for one healthy baby and terminating the poorly twin. My concern with waiting til 32 weeks would be what if the babies decided to arrive earlier? That choice would be taken from you.

No advice but huge hugs to you and your family

Oh op that's horrendous. I'm so sorry. Am I right in thinking you'd be delivering both at 32 weeks?

I have reread your post several times and it does seem likely that the unwell twin won't survive to 32 weeks as he/she is already so tiny they aren't on the centipede charts. I assume you deliver both at the same time regardless of when the termination or natural death occurs.

I think you have to give your healthy twin the best possible chance which is highly likely waiting and letting nature take its course did prof discuss the likelihood off poorly twin not surviving to 32 weeks?

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There are just no words but I'm so sorry you're in such an impossibly difficult decision. I understand that it's not the same, but we recently lost our baby after a tfmr so I completely empathise with how mentally, emotionally and physically tough this time is. The one piece of 'advice' I really appreciated was that there are no wrong decisions in this scenario: only the right decision for you and your family. I wonder if you've been referred to ARC at all? I phoned them a few times and have to say they were brilliant at being impartial, answering my questions and listening to me talk out loud about anything. xx

Goodness me, what a heartbreaking situation to be in. I have no idea how you're feeling but from an outsider I wouldn't probably say I would let nature take its course, don't know if I would be able to take the risk of having a termination, but obviously it's a massive personal decision. So sorry

I'm so sorry that you're facing such a tragic situation. There is no right or wrong option. You're incredibly brave. Sending lots of love.

OP I'm really sorry.
I had DCDA twins, one had multiple issues and would have been profoundly disabled, I was offered the chance to wait till 32 weeks, but opted for a selective termination at 21 weeks. I was very worried I wouldn't be able to go through with it at 32 weeks, and they can feel pain then. I appreciate I took the risk of losing both of them. My surviving child is healthy, his sister was squashed and macerated I believe the term is, but recognisably a baby when they were born. for you