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!

So sorry the way this thread has turned out op, there are many charities and agencies who could help you through this- and I wonder if a couple of sessions with a therapist might help you answer your own questions. Given the 1% chance, you might find medical advice favours earlier termination - talk to as many nicu nurses as you can informally, as away from official ‘advice’ set ups we found Med professionals were a bit more relaxed about being held accountable for what they were saying and gave a fuller picture - as a pp poster said, there are lots of implications to twin termination/live birth and you don’t want to be blindsided by unexpected outcomes- as much info as possible will help, but - and I say this gently- mumsnet may not be the place to get that info -

No but I will spend the rest of my life raising my child @LobeliaBaggins and I have to read on here constantly about how he would be terminated by most people because they couldn't cope. They would.

It isn’t YOU who will be doing the caring, though, is it?
It’s not a thing the OP is doing lightly.
Looking after three children, one potentially with a disability isn’t going to be easy.
Having known parents who have had to care for severely disabled children- through to teens and adulthood, it is a full time job over 24 hrs with no respite.

I agree that it's not the place to debate ethics but that's not the same as considering the specific situation the OP is in. I don't think it helps the OP or anyone to pretend that this is a no brainer when there are significant risks involved. The risk to the other baby, the risk of the babies being born before the abortion goes ahead. It's not about whether it's morally right or not, it's about the consequences, emotionally, mentally and practically, the OP and her family could endure either way.

Somebody suggesting neutrally that one option could be that the OP thinks about the down syndrome baby and perhaps suggests that the OP finds out more about people with DS if helpful is not the same as telling the OP she shouldn't get an abortion. It's a really difficult decision and one potential outcome is that the OP doesn't go ahead with the abortion. If she is comfortable with her choice and knows it is the right one for her then that is absolutely her prerogative, I don't think most posters are suggesting considering alternatives for any other reason that the associated potential risks. It's not that they're making it a moral issue as such.

That is your choice. It is not up to you to decide for other people.

Do you have a disabled child ? I help parents battle SS everyday for a little bit of support. Maybe campaign to the government about better support for disabled children instead of slating abortion. I would not continue a pregnancy with severe disabilities and I'm a LD practitioner. If there was adequate respite and services I might change my mind until then it's a no.

I don’t want to just “cope” though.

i can’t imagine being so arrogant that I’d make someone else’s choice about ME. why do you think this is about the choice you made?!

Hi OP
I want to give you some practical advice. Find out from the consultants what psychological support they can put in place for you for what will be a very long wait regardless of whether you go for 30-32 weeks. See if you can be referred to the perinatal mental health team and get some counselling too. Make sure you have some supports in place after the termination as you also have very little time between the termination and potential birth date (even if you go to full due date). Speak to ARC and maybe also SANDS too

Do not feel the need to explain your decision to anyone and if you don't want to get into it say that you lost the other twin. And FWIW a colleague had her baby at 26 weeks and baby survived although it was a long haul and very stressful.

God some of the posts on this thread are so far from unhelpful it's unreal.

I'm sorry this is happening to you OP, I don't have any real advice as I've not been in this situation but I respect your decision. I hope these posts aren't making you feel bad.

If there's only a 1% chance of triggering pre-term labour, I don't think I could wait until 32 weeks. But I have never been in this situation so in reality I really just don't know what I would do - I can only imagine. I am so sorry OP, what a completely horrendous situation for you to be in 😔

For goodness sake give the op a break.

A cute child with downs syndrome in main stream school isn't the norm as presented by the media. Some are doubly incontinent with severe behavioural issues and are in inpatient facilities. Many have dementia by the age of 40 almost all by the age of 50. It's a spectrum you can't predict what problems the foetus will have. The government need to fund better services for disabled children/adults .

I’m so sorry you have to make this choice, please ignore a lot of the very insensitive posts here, you know which decision if right for your family but I can’t imagine how hard it is for you. I wish you all the best xxx

What a troubling situation. I wish you peace with whatever decision you make OP. Cannot be easy for anyone involved. Awfully sad.

Great advice. Focus on the practical. Do not explain yourself to anybody.

Hi OP, I am so sorry. You have decisions to make that are so very very difficult and I think unless someone has been through what you are going through cannot understand. Some of the posts on here are so unhelpful and so cruel. As someone else has said, you do not need to explain to anyone what has happened. You can say what the poster said.

please be supportive of the op this is such a sad position to be in. Any answer will be difficult.

OP I'm not sure how helpful this thread is for you...
I hope you're not taking some of these comments to heart
It might be an idea to pull the thread due to the nature of a lot of the replies in what must already have taken courage to make this decision and be going through this

Excellent post. I agree with this completely.

My friend has an older brother with DS. She did not have much of a childhood. Her and her younger sibling were very much expected to be assistant carers for her older sibling. She loves her sibling but feels like she's never been allowed to have a life of her own.

As her parents have gotten older they have fully expected her to give up many aspects of her adult life to care for him. As a result and in order to give herself a chance at freedom and a family of her own she has decided to emigrate to AUS to give her the space she needs to have her own life.

What a horrible dilemma for you. I’m not sure what I’d do in your shoes. I’d probably be guided by the medics but I would also seek out therapy with someone well qualified in this area. I think you need a safe space to air your feelings and worries and Mumsnet isn’t it. Try ARC, they may have more experience with selective reduction.

There’s quite a lot of research on different outcomes in your situation and I’d imagine that is what’s guiding your doctors.

What would be worse for you? The reduction then premature labour or early labour before the reduction? Also can the reduction be carried out in very early labour or is the cutoff before any sign of labour?

It might be worth a private consult with someone like Professor Nikolaides or one of his team at the Fetal Medicine Centre in London though you may be under his care already. Might be worth giving them a call, they’re amazing imo.

I hadn't read the full thread before I'd commented (with a little practical advice and some support) but I can see now why the OP stopped commenting. She's probably hiding in a corner somewhere. So congratulations to all those who suggested she rethink this decision, especially those who said whoppee I'm parenting a disabled child, well done you. She doesn't need to hear positive stories about your friends kids, your own kids or people you work with. She knows adoption is possible, she's not stupid. With all due respect, she doesn't care, she's thinking about her own family, her circumstances, she doesn't need this right now.
I get it's a sensitive subject but she's not going to change her mind but do feel free to pat yourselves on the back for kicking her while she's down.

Why on earth was my post deleted? I was trying to help the OP regarding timing. Waiting to 32 weeks will be agonising, that's far too late for her emotionally given how developed a 32 weeker is, given the decision she's made (& is entitled to make).

If you ever want to talk with no judgment OP I'm here.