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!

You're dammed if you do and dammed if you don't. In your situation I would abort. 1% risk to the other twin is really low, that means 99% are ok.

Like the other poster I have a child with ASD, would I change him ? No, but the world is a cruel cruel place !

There's a lot of talk about birthing a dead baby in thinly veiled attempts to dissuade the OP; in this instance she would be offered a c section

I would want to terminate as early as possible if I'd made that decision, even if the other twin was at more risk that way. That's my head speaking though. I know my heart would find it harder if I was in that position. Have they said if you terminated early and didn't miscarry the healthy twin straight away, you'd have every chance of a healthy pregnancy at full term? That's what I'd hope for but I'm so sorry you find yourself in this situation

You don't know that. Your circumstances are different to the OP. You don't know the severity of the unborn twins DS. You chose to keep your disabled child, it's none of your business if others decide differently. If you don't like seeing it, don't come on to the Pregnancy choices board.

That’s wrong and you can’t live life like that. Questioning every decision? What an awful thing to say to the OP and what a sad way yoj must lead your life.

OP - I’m sure the doctors are more qualified than this ballbag who seems to suggest the doctors have it wrong. You do you, and be reassured in the doctors opinion and the good advice here, not the trolls.

You have to read about it? Have you tried...not going on the Pregnancy Choices forum?

Alternatively I could say I have no problem reading about it, so you'll cope too.

Unfortunately, I suspect that this is a decision that you are going to have to make on your own. I would actually get a pen and paper out, sit the paediatricians and obstetricians down and nail them to percentages at each week. What risk are you willing to take?

My heart goes out to you being in this situation. It's almost an impossible decision to make.
Having had the joy of news of twins arriving must have been exciting for everyone. This news is beyond imaginable. Those who were excited though are not you or the father who have to make this awful decision.

You need reassurance of the extent of the risks involved at any point. They will only be able to give percentages. You know that.

I know that risks and percentages are not much help to you right now.

I wish you wisdom beyond that which most of us are ever required to have. I know that you're devastated.

I think that you need to play various scenarios out in your head. 'If' this happens etc.

This is one of the saddest threads I've ever read and I only wish you strength to make the right decision for you and for your family.

If I could give you a big hug, I would.

Would you consider adoption if the twins did arrive earlier than 32 weeks?

With bells on x

why are you asking? What’s that got to do with it?

Don’t read it then. That’s your decision and will be yours only. You don’t speak for anyone else

How on earth does your DH manage to work sixteen hours days, every day? That’s pretty unbelievable. He must be exhausted.

OP I just wanted to say you are in a terrible, terrible situation and I genuinely wish you all the best. How heartbreaking for you, please take care of yourself, you are doing what you think is best and that’s all any of us can do.

The OP doesn't want to raise a child with DS. If the abortion hasn't been carried out and the OP gives birth both babies are most likely to be born alive.

Nobody cares about your shitty, ignorant opinions Judelawswife68. So go away.

God how awful for you OP. Hard as it is I would wait until 32 weeks, I know it must be agonising but should make things ‘after’ a little smoother.

@SomethingNastyInTheBallPool i understand your love for your child, who has DS, and it must be difficult not to see your own child’s face in these situations. But, the decisions other people make are not personal to your child, they’re a completely separate set of circumstances and trying to pin personalities and mental images of lovely little kids onto OP’s situation is just going to increase the agony for her. Let’s face it nobody would terminate if they could ‘see’ the person they’re terminating, whether it’s for medical reasons or not.

@Judelawswife68 personally I think that fuckwits devoid of empathy should not post on the pregnancy CHOICES forum to spout idiotic shit at a grieving mother.

I had twins delivered at 30 weeks as I had severe pre-eclampsia. As this was pre-planned, I was given a steroid injection 48 hrs before delivery to help their breathing after birth. They were incubated in neo natal special care but there were no problems. I would opt for 30 weeks.

Who asked you?

Having recently terminated a solo pregnancy after a DS diagnosis, my heart goes out to you OP. It's a horrid place to be in to make that "choice" (like heck it feels like a choice sometimes).

I think it's misleading to paint the future with a child with DS as all rosy. One person said to me "my friend has a DS child and he's just so cute" as if the promise of a cute baby was all I needed. But most children (and adults when they survive heart defects etc) with DS lead medically complex lives. Putting the needs of your living children above those of your as yet unborn children for me, at least, was the primary reason we made the choice we did.

Many yes but it’s so so difficult to tell plus we do not know the OPs age or if she wants to risk leaving her other two children to potentially be carers for a sibling and a sibling that could, as they age, end up with early dementia as can happen with Down’s syndrome adults.

it’s not just about what the OP wants it’s about the impact on the other siblings too.

it’s a difficult choice and I’m certain the Op has spoken to as many people as she feels necessary already on whether to continue and just wants guidance from those who have had the procedure she needs and what happened to them.

well firstly I wasn’t talking to you. but since you’ve piped up (again), obviously OP would have further decisions to make. This isn’t a situation she wants to be in, hence the termination. Ffs some people are so dim

@Wouldloveanother I really hope I haven’t given the impression that I’m judging the OP for her choice, as that’s really not what I intended. Everyone has their own circumstances. I just wanted to share a few things from my own experience in case it could spare her any of this heartbreak.

Op if I was in your situation I would do what you are doing. Good luck. It’s a terrible cruel thing you are facing. I will be thinking of you. You are incredibly brave. Ignore some of the comments on here especially from those that do not have a disabled child. How dare you advise from your own perfect worlds.