Selective termination of twin due to Down Syndrome

[DaisyPoppy23]

Not too sure why I’m messaging. Possibly to vent or maybe find people with similar experiences. I could do with some positivity!

I will try to keep this as brief as possible. We were over the moon to find out we were expecting twins (DCDA). We shared the news at about 17 weeks with friends and family and everyone was so excited! We felt blessed! Then, at our 20 week anomaly scan, a heart defect and query over a missing kidney was detected in one of the twins. We were referred to a fetal medicine unit and paediatric cardiologist. Fast forward a few weeks from there and we are told that one of the twin has a pelvic kidney (which isn’t too much of an issue) but also a severe heart defect called AVSD which would mean open heart surgery in the first year of the baby being born. We were then told that this defect meant there was a 50% chance of the baby being Down Syndrome. They sent us for a NIPT test straightaway which came back as highly likely for Down syndrome. We were then advised to have the amino to confirm that this was the case and to also check which twin had it. The amino results have come back to confirm Down Syndrome in the twin with the heart defect but the other twin’s results came back normal. We have decided to have the selective termination as we feel that raising a child with a severe disability isn’t right for our family. We already have a 15 month old and will of course have another new born. I appreciate this isn’t what everyone would do but we have to do what is right for us and our family. The predicament we are having is when to have the selective termination. We were told to wait until 32 weeks to give the healthy twin the best possible chance in case it triggers pre term labour. There is a 1% chance of this happening. I am terrified of waiting that long as I am so worried they will arrive early, as twins often can. I am also not a big person at all and I’m already struggling with carrying them both and running around after my 15 month old. If we terminate now and it does trigger pre term labour then there’s every chance that the healthy twin could be effected and have a severe disability because of being so premature. I am considering waiting until 30 weeks so there is more chance for the healthy twin. I feel absolutely terrified about this whole situation and so completely alone. My family don’t live near me and my partner works 4am until 8pm, 7 days a week. I am really struggling with holding it altogether for my 15 month old. To top it all off, she’s going through some awful sleep regression and I’m absolutely exhausted. I’m usually a patient and laid back person but I feel completely defeated and at my wits end. I honestly feel like I’ve got to the point of not being able to cope.
I wish someone would tell me what to do and that everything will be ok but I know that can’t happen. Any wise and positive words to get me out of this hole would be most appreciative. Also, perhaps any advice on the best time for the selective termination would be really useful. I don’t know if I’m in the best frame of mind to make such a decision. There just seems to be a risk whichever way we go forward. Help!

@SirVixofVixHall

Do you know how long on average a disabled child will be in foster care before being adopted in the U.K.?

Adoption isn't a magic pill for the OP and it's actually really inappropriate for all these comments jumping on when the OP has made her choice

" We don't want to " shouldn't be the reason. There are lots of things people might not "want to" do.

This is why someone can't talk in RL, can you imagine how much harder it would to have friends saying this.

My three closest friends of 25 years? Like sisters to me. Would never ever say some of the things on here. They would listen and love.

Not a friend if decides to use the opportunity to debate the issue with you

@ElephantsintheCupboard

why make life harder for yourself if you don’t have to?!

there are no prizes for taking the toughest path in life.

Hi op, what a horrible situation to be in. I'd go with medical advise and stick it out for as long as possible. If I was in your position I'd probably make a similar choice, unfortunately a family member has downs, late 20's now, will never be able to live by themselves as their needs are great. I've seen how it's effected their family unit and isn't something I'd want for myself when the time comes

But if you don’t “want to” you aren’t going to be much of a parent to them.

A disabled child would deserve better than me. A lot better.

I hope your DH is able to reduce his hours at work, 7 days a week 4am til 8pm is one heck of schedule. When does he get any respite? If his working hours aren't going to change then you are going to essentially be a single parent to a toddler and a newborn. You are also going to have to manage your own mental wellbeing during the termination of the twin with DS. Please seek external support in real life, this isn't something you can cope with alone.

That is exactly the law in this country, thank goodness. If a woman doesn't want to bring a baby to term for medical reasons, she doesn't have to.

So sorry you’re having to make this decision OP. I haven’t got any advice, but after a lot of the posts I just wanted to say I would make the same decision you have x

OP, I can't offer you any advice but just wanted to say how very sorry I am that that this is happening to you. I miscarried one of my twins at 12 weeks and then the results of my quadruple test came back high risk. Fortunately my amnio was ok but I absolutely knew that if those results had been different, I would terminate. Only you can decide what is right for you and your family but please take as much time, and medical advice, as you need.

There are certain topics (like this) that posters should get an automatic ban if they post such heartless comments.

Sending love and support. I lost one my twin boys at 6 months. Gave birth to both of them at 40 weeks. Horrendous. Being told I was pregnant with twins was the happiest day of my life and I'll never stop thinking about my boy who didn't make it. Its so horrendous when you're so excited and full of love and then it goes wrong. Stay strong x

I'm so sorry OP

And disgusted by those who appear to be sticking the boot in at this horrendous time.

We all understand that knee jerk reaction, but the world is horrible and unfair. I worry every day about what will happen to autistic ds when I am gone, it makes me feel physically sick. Not many mothers would wish a painful/extremely vulnerable life for their child if they had a choice.

What a horrible situation to be in, my heart goes out to you.

The only relevant experience I can give you is that my mum miscarried twins at 30 weeks' gestation and she later told me it was very difficult because of how developed the foetuses were.

An earlier abortion puts the other foetus more at risk and a later one may be emotionally harder. I don't think any kind of abortion in this circumstance is going to be easy though and I think only you and your partner can make that choice.

Gosh, what a heartbreaking situation to be in OP. No judgement here, I can't even imagine what it has taken you to reach this decision.

Weighing it all up, I would wait as long as I could. I know that will be really painful, but I think you might be underestimating the mental impact of carrying a dead baby around inside you for up to ten weeks. I would want to limit that time as much as possible. I would also want to see my baby I think, if that's possible, so that would be a factor. Another factor would be wanting my healthy twin to have as long 'inside' as possible and minimising the chance of them being premature as much as I could.

So, on balance, that would be my choice. I think. But it's such a terrible choice to have to make that I completely understand how hard it must be. Sending you strength OP.

You name changed @ElephantsintheCupboard

do you must have known a rather odd comment to make

@ElephantsintheCupboard

not wanting to is as good a reason as any to abort

women can now abort for any reason. Praise be

Yes, you are right and I am sorry. It was thoughtless of me and I responded far too quickly to the post I quoted, I am distracted and sad today due to something else in my own life and so didn’t give enough thought and attention to my reply.
I am sorry OP, I had misunderstood and should not have responded . I have asked for my post to be deleted.
I wish you the best outcome for you.

1% risk? I would be asking to terminate the unhealthy fetus now.

I'm sorry you're in this position. It must be incredibly stressful and frightening. I hope everything works out for you and your family.

This is why the "as late as needed" bit of "as early as possible, as late as needed" is there. For exactly these heartbreaking situations.

Best wishes fort the rest of your pregnancy, @DaisyPoppy23 . I hope it goes as smoothly as possible in the circumstances and you have lots of support.

OP I don't know if you're coming back but I just want to say I was in your exact situation in June - one of my DCDA twins was picked up as having duodenal atresia/annular pancreas at a 31w scan (both highly correlated with Downs) and we had made the provisional decision to terminate had the amino and microarray come back positive (luckily they came back negative). In our case we would have had to have had the potassium chloride injection done at 34 weeks as they prefer to do it as close to term as possible but I think in your situation if the risk is only 1% I would go ahead with it at 30 weeks, twins can arrive at any time and I would get it done sooner rather than later. I'm so so sorry you're going through this, it's a living hell 🙁

I really feel for you OP. In your situation I would be doing the same thing. I have no advise at all but I wish you all the best.

It's such an awful decision to make, and I'm so sorry you are going through this.
My head is saying hold on as long as possible to give one the best chance. 32 weeks would make a difference if you could handle it until then.
You've made the right choice for your family, no one has the right to judge you for that. For every 'success' story people are bombarding you with, there are countless more who struggle through every day wishing they'd had your chance to choose differently. It's also ridiculous to point out that there are people desperate to adopt a child with Down's syndrome; there are thousands of children in care. Perhaps they could direct their energy into supporting children here already.
Good luck xxxx

I have great sympathy for your situation OP. If you feel that you can’t keep your baby with additional needs, would you consider allowing them to be fostered in the first instance?

I know it goes against popular discourse, but sometimes simply affirming someone's decision is not the most loving thing to do.

It really is when someone's made their decision. They haven't asked to be convinced or swayed otherwise. When they have decided the best course for their family.