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...

[GrumpyMiddleAgedWoman]

I'm so sorry, OP. I have no useful advice, only

[Ratbagratty]

I don't have any other advice to give other than please try and contact tamba and other specialist charities they can help and support you through this difficult time.

[AllHail]

Have you contacted ARC? They are brilliant and will just talk to you as long as you need them to.

[AllHail]

www.arc-uk.org

[DecomposingComposers]

I have no experience of your situation but I do have experience of Prof Nicolaides. He looked after me during two pregnancies and I would absolutely go with his advice.

It's a heartbreaking decision either way though and my heart goes out to you.

[lolea]

Wow ladies thank you all so much for the replies and your kind wishes. When I saw all the responses I felt sick thinking there would be some negative judgement in here, so I’m profoundly overwhelmed by all the kindness and sympathy. It’s really appreciated.

To answer some questions. Our local hospital, which is a tertiary centre so deals with difficult issues supposedly regularly, has advised that by terminating one twin now the risk to losing the other (either following the procedure or as a result of a premature labour) is 10%. However they couldn’t reassure me well enough that they’ve had enough similar cases to qualify this claim so I’m not sure where they get their figures. But they’ve also categorically said they will not do any termination past 24 weeks as it’s against their ethical policies. So it’s now or never.

Prof Nicholaides however said the risk was much higher if we terminate the sick twin now - more like 20%. And that our problems are multiplied if I do deliver the remaining twin at around 23-24 weeks and the hospital ‘fight heroically to save it’ (his words) as the chances are that the baby would have multiple issues as a result of being so premature (assuming it survives). As a few people have said here I’m inclined to believe prof Nicholaides as ive heard and read so much about him and his work that now I feel like I’d be an idiot to ignore his cautionary advice. Plus he told us that’s in France, Germany and Belgium the 32 week termination point is standards practice in this type of a scenario - which gives me a glimmer of comfort that it’s not just me that’s done this before (it feels like it at the moment).
As a couple of people said it’s really the emotional aspect of terminating at 32 weeks that I’m terrified of. It sounds awful, but if nature did take its course and the sick twin died it would actually be a massive relief as it takes the decision out of my hands. I asked out local hospital whether that was likely and they said there’s no way of knowing for sure, and that twins grow at different rates and potentially this one may catch up at some stage.
Annoyingly I didn’t ask prof Nicholaides the same question and wish I had - I think I wasn’t just too dumbstruck taking in the 32 week recommendation my mind went to mush.
Prof Nicholaides recommendation isn’t that the termination is done at 32 weeks, assuming I’m not showing any signed of labour beforehand (in which case it would be sooner) and then in an ideal scenario I’d be left to go to full term, or as near to it, and then the live baby’s would be delivered as normal burn of course the dead twin would also be delivered too (beyond horiffic I know).
I definitely think I need counselling - both now, in the lead up and afterwards. I’m seeing the local hospital on Tuesday so I’m going to ask for their recommendations and will contact ARC, thank you.

AldiAisle - I’m so sorry that you went through a similar thing. After your termination how long was it that you gave birth to your remaining twin?

Thank you all again. It’s so comforting to have he support of strangers in the darkest of times.

[lolea]

God just seen the number of typos in that. Stupid phone! To clarify, Prof Nicholaides has said the best option IS to terminate at 32 weeks (not ‘isn’t’ as appears above ...big difference!). Phones. Grrr!

[RandomMess]

I think terminating whether done in a couple of weeks or at 32 weeks will be equally emotionally difficult and you will grieve just as much. It will be heartbreaking even if your twin dies spontaneously. It will be joy at a safe arrival tinged with sadness and grief that it is only one.

I wonder if you can contact the Prof clinic and ask that question?

I do think the Prof clinic has much more expertise and to be under him whatever you choose.

[AnthonyCrowley]

Could you ask for a section after the termination if you have that done at 32 weeks? Would you find that a bit better than a vaginal birth?

Sorry, I'm sure any option must be horrible....am just trying to think of things which might make it not quite as bad?

[sheshootssheimplores]

I would do whatever is less likely to cause harm to the healthy twin.

I’m so sorry you’re going through this OP

[lolea]

Yes randomness that’s a good suggestion. I saw prof nicholaides at his Harley Street clinic so just need to work out how I get into the system via Kings. Feels like a bit of a grey area at the moment as I’d need the local hospital to refer me on. But you’re right, getting his view on whether that’s a likely outcome would be interesting, and potentially comforting (not that id rely on it of course).
It’s just so awful going to these scans and appointment wishing that one of your babies is sicker than they are and hoping they do pass naturally. It’s so perverse I almost can’t even comprehend it. I just find myself wondering how on Earth it all came to this, and how lucky I was with two straightforward pregnancies beforehand. You never know how good you have it until it’s gone is so true!

[lolea]

Hi Anthony. Yes I’d def ask for a section (and had two previously tricky births including an EMCS) so I assume that it would be agreed to. I Agree that would be the better option too - and at least give me some control over the process.

[Drunkcaterpillar]

I had a selective reduction at 17/18 weeks after a bad genetic test result. My daughter is 10 now and beautiful. I couldn't have inflicted the genetic syndrome her twin had on him and although it was very tough all was okay and well managed with really kind staff.

[omafiet]

I'm just so sorry that you are dealing with this. I chose to terminate at 17 weeks due to multicystic dysplastic kidneys in our daughter. I still remember the horror of that time. Sending you peace as you make your decision.

[QuestionableMouse]

There's nothing wrong or bad about wishing the decision would be made by nature for you and that's what you're doing, not wishing your poorly baby away.

[sleepwhenidie]

I would give the Fetal Medicine Centre a call with the question for the Prof. See if you can speak to him on the phone next time he is in. I’m sure he will find time to answer you on the day he is in the clinic.

[sleepwhenidie]

And also ask them how you get under the team at Kings, I’m sure they will also handle the admin (I went from FMC to Kings for further tests and they sorted everything, just had to turn up).

[LonnyVonnyWilsonFrickett]

I think you should press on with moving your care to Prof Nicholaides, even I've heard of him! And then talk further to him, as well as getting current hospital to refer you for counselling. Their 24 week limit doesn't sit well with me, I would probably lose confidence that they'd be making the right decisions if they're working to a specific timeline in that way.

I wish you peace OP, whatever you decide

[Bluerussian]

I'm so sorry you are facing such a sad decision. Personally, I would terminate the twin with great health problems, now, and hope for the best that the other one would survive - which it probably would, frankly. Doctors always paint the least favourable outcome to prepare us but you are likely to produce a healthy baby.

However the decision is yours, bless you. Not easy.

Wishing you all the very best.

[BabyNoNaps]

I'm so sorry you are facing this harrowing decision. Everything that everyone else has said is spot on. I don't know if it helps you at all, but my personal view is that babies like being in the womb, they have a "good life" there. I would argue that the choice to terminate a sick baby, whether at 19 weeks or 32 weeks is a choice that ensures their entire existence is completed in a warm, comfortable and familiar place. I hope that might bring you some comfort. In any scenario I believe you have nothing to feel ashamed or guilty about. You must make whatever choice is right for yourself and your family. Personally, I would make the decisions thinking primarily about the wellbeing of the healthy twin.

I know it should go without saying but if and whenever you choose termination, you still have the right to grieve for the sick twin. The sick twin has poor prospects regardless that aren't your fault. Exploring the likelihood of the sick twin dying in utero or shortly after birth might help you to make your decision. Perhaps you could send an email to Dr Nicolaides through his secretary.

[AldiAisleOfTat]

@iolea they were born at 38+1 but only because I then went on to develop gestational diabetes and so was induced. He was twin 1 so the presenting twin and it was a normal delivery. I did bleed a lot partially because my second twin stopped my uterus from fully contracting but settled when she was delivered.

[SylvanianFrenemies]

I am sorry you are going through this.

I had tfmr at 18 weeks.

Tbh I would go with the expert advice you are getting, and give your healthy baby the best chance. You are going to have to deliver and grieve for your poorly baby anyway. @babynonaps post puts things beautifully. Your babies are comfortable where they are. If your poorly baby passed away naturally that is likely to be a great comfort. Totally understandable to want that, I've been there myself.

The ARC-UK helpline is amazing if you want a knowledgeable and sympathetic ear, and they don't mind if you cry!

[RoRosmama]

I have no advice to offer you but, I didn't want to read and run. My thoughts are with you and I think you are incredibly brave. I wish you and your family all the best ❤️

[Mothertoanangel]

Lolea I have just seen this thread two months on so I know you will have made your decision by now.

Firstly I want to say how truly sorry I am that you have had to go through this - I know first hand the heartbreakingly difficult decision you have been faced with.

Your situation is exactly the same as ours and I am so sorry that you too are going through this. I am heartened to read all the positive support as we too were worried about the response we would get.

Having found out at 25 weeks that one of our precious twins had chromosomal issues we were given the option of TFMR. The professor we were seeing gave the same advice as yours - termination could not happen before 30 weeks or we would risk the health of our healthy twin.

After hours of research and soul searching, we made the impossible and heartbreaking decision to TFMR at 30 weeks. This meant I had to carry both babies for another 5 weeks before the procedure could take place. It was the worst period of time of my life.. my baby was kicking inside me and developing and all the time I knew what would be happening soon.

The professor assured me that our precious girl wouldn’t feel a thing as the procedure involved an injection to the cord which she could not feel.

Two weeks after the procedure took place I went into spontaneous labour and both our girls were born at 32 weeks. That was three weeks ago now and we are currently in the process of planning our little angels service and cremation while our other twin is doing well in special care and expected to be home in a week or so.

I just wanted to say that I have felt every emotion you have described. However, one emotion I have not felt since giving birth is guilt which is the one I was petrified would haunt me for life. I know I made the best worst decision for my precious angel. I feel overwhelmingly sad and bereaved, but I don’t feel guilt.

I don’t know what decision you went with but whatever it was it was right for you, and I pray that your healthy twin is now doing well.

You will be in my thoughts and prayers and know that you are not alone xxxx

[Jahree]

Hi @lolea
Firstly im so sorry to hear your going through this also, its easily one of the hardest decisions a mother will have to make. I am now 28 weeks pregnant with non identical twins. Just a bit of background, from very early I was told 1 twin had a brain development issue which could be genetic and that baby would either die before birth or shortly after. I didnt do any invasive test to determine if baby had a chrosome disorder because the risk of miscarriage for the whole pregnancy. At 18 weeks I was also advised that having a fetal reduction procedure at 32 weeks was the best option as the healthy twin is more likely to survive. So since then ive gone along with my pregnancy and had no invasive test just regular scans to keep an eye on both babies. Doctors keep reminding me that my small twins abnormalities make him/her incompatible with survival outside the womb and at 27 weeks i was advised that if small twin goes full term it could pass a couple hours/days after birth. At 18 weeks the thought of doing a reduction at 32 weeks was an easier pill to swallow but now being 28 weeks and carrying both my babies for 7 months I can say the reality of having a termination is a lot harder. I have become extremely emotionally attached to both my babies, especially since ive felt my small twin move and kick and watched it grow(even though growth has been minimal) I know like myself, you want to do whats best for your healthy twin and in our case this is termination at 32 weeks but spend the next few months mentally preparing yourself because emotionally it gets harder as you get closer to the time. Its easier said than done but try not to get too attached over the nect few weeks if your 100% sure a terminatiom is what you want to do. I advise you read into the procedure and read into other stories of delivering a still born. Its not going to be easy but you will find the strength to deal with what ever outcome. I dont doubt that you may deal with regret/guilt (I know I definitely will) but remember your doing it for the right reasons.

I hope we both find peace in this situation. Please feel free to ask me any questions and I will update you on what I decide to do and the outcome.

Sending you lots of love and positive energy. You are stronher than you know and will definitely get through this.