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!

OP, sorry you’re in this impossible situation. Like other posters, I recommend speaking to ARC who will have guided women through similar situations many times

@DaisyPoppy23 ARC are an amazing charity and, when you are ready, can provide you with the support your family will need.
A 1% chance of triggering labor to me feels very low. I bet to you it feels like a much higher chance but really, really think about that. Your body is already going through so much. Can you really hold on that long? Could you maybe ask your consultant if the risks are worth taking to complete the termination sooner?
Is it possible at all for your partner to cut their work hours and be around a little more? You're going to need each other.
No judgement at all, just want to wish your family the best. You've been so brave and selfless in this decision. Brave because, let's face it, we want to our children to outlive us. Selfless because you've spent so many sleepless nights going over this, keeping this child means some brutal surgeries, possibly throughout their life, if there's a chance the child could not live independently in adulthood your other DC would have to take on the caring and responsibility when your older.
Don't ever feel you need to defend yourself. It's easy for others to say what they would do but they're not you. Everyone circumstances are different, our capabilities are different, our families, support systems, there's so much to think about and you've done that bit.

Goodness, all the options sound horrendous honestly.

You must feel in a very difficult position OP.

I think I would need to think about:

1. What if the other twin has a life limiting condition?
2. What is they impact on the other twin of a selective abortion assuming you then have to carry the aborted twin? How long is this safe for? What are the risks associated with that?
3. How would you cope mentally with any all of the decisions? Would it be easier mentally if the whole thing was a pregnancy that 'didn't work out' (for want of a better wording) than having to explain what's happened to your other children or to somehow keep it a secret?

I know it goes against popular discourse, but sometimes simply affirming someone's decision is not the most loving thing to do. And to make a fully informed decision, you need to be able to hear from people who have been in a similar situation and know the emotional consequences of what they may be about to do. It's much easier to simply affirm, but you can gently posit an alternative without being pushy or insistent. In order to make a fully informed choice, you need to hear a range of perspectives, especially when it's something as life changing as this. If I was in this situation I would very much welcome being encouraged to consider all sides before going ahead with something this major.

But she could also have one of the many children born with Down's Syndrome who go on to live happy, fulfilling, normal lives! It's not cruel to discuss this with OP. It's important.

OP's already had this discussion, no doubt many times, with her partner and the medical team. Why do you think she now needs to discuss it with you?

It's already being very traumatic whichever decision they make. Please don't make it worse, they don't need that. It is being cruel.

@DaisyPoppy23 It's hard but I'd leave it as long as the medical team suggest

The OP has made her decision, she is asking for support and insight from others who have been through similar, not an ethical debate.

A difficult choice. I would terminate at 30 weeks as you intend to do. And I wouldn't pay attention to anyone trying to guilt you into not terminating, especially previous posters.

Agree wholeheartedly- The “Care” system is terrible for too many children, despite well-meaning foster parents.

So many children are deeply emotionally traumatised by their experiences, and the damage lasts well into adulthood, and maybe for a lifetime.
It isn’t a “Fairytale” ,.. If the children as adults are lucky, they can somehow accept their trauma, but many have lingering issues well into middle age and beyond.

OP, I don't have any advice, but want to offer all my sympathy to you. What a difficult situation and I'm so sorry you're going through it. I hope you can access the support you need.

Sorry that a load of other posters are questioning you on things you have already considered and are entitled to make your own decision about, the one that is right for your family.

where did OP ask for help making the decision? The decision to terminate is made. She’s trying to decide what gestation to do it

@newsaint I've reported your disgusting post.

OP has made a decision already, this is not the time.

Maybe just some kind of reassurance.

ate you getting any reassurance and support from your partner or friends?

This is emotionally a very tough post to read but having been through 3 pregnancies and knowing mothers who have given birth premie and mothers of twins who naturally come earlier anyway, there is no way in hell if I was making this decision that I could wait until 32 weeks. There is a not insignificant chance of them being born by then.

I wouldn't automatically class Downs Syndrome as severely disabled, I am only picking up on this because some people do assume that.

I would also be extremely worried about selective abortion due to the other healthy baby.

It's a really difficult decision but since you are torn I think it's important to be realistic and not just say of course everything will be fine no matter what you do, as really that's just platitudes. I really hope everything does go okay though

@newsaint I have reported your hateful post.

Also, the message at the top of this board asks posters not to debate the ethics of termination. There are other boards for your opinions and anecdotes about loving children who were not terminated.

Never a more ironic user name have I seen Before

Same. What a horrid, horrid thing to say.

I have twins so perhaps more qualified to comment in some respect

I was also told at one point that I may have to choose to sacrifice the "weaker" twin to give the "stronger" twin a better chance. This was at 28 weeks.

I elected to carry on. But Down syndrome wasn't a factor. Had it been I can say that yes I would have taken the painful decision to let her go

My twins were born at 34 weeks. But In my NICU there were some very small babies born at 24 weeks. I would elect to do it at 30 weeks. There is no guarantee of early labour so you may go on a couple more weeks.

Twins is hard Especially when you already have a toddler at home and especially if one has medical issues

NO ONE IS ASKING YOUR OPINION ON ‘THE ETHICS OF TERMINATION’ FOR FUCKS SAKE

How do?
for some of course, and clearly you.
for others, no.

How do

I work professionally with people with Learning disabilities. Downs syndrome is a huge spectrum some will lead relatively independent lives with some support . Others will be doubly incontinent require 24 hour care extensive requiring behavioural interventions. They are very likely to have Alzheimer's disease by the age of 40 almost all have it by the age of 50. You can't predict what difficulties a foetus with downs will have. If you absolutely want the termination I would do it earlier it's a 1 percent risk for the other twin.

Nevertheless it is the OP's choice and she has made it. I would terminate too and I would not be giving much credence to keyboard warriors on here, since none of them would be spending the rest of their lives raising my child.