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!

Well luckily for you it's got absolutely nothing to do with you.

Hi OP. I'm really sorry you're going through such a difficult and upsetting time. I honestly can't imagine being in your shoes.

What I will say is (just to add information for you) is that I was told at 20 wks that our DS had Down syndrome. We nearly terminated then decided against it. He was born and needed open heart surgery at 3 months old. It was a tough time, but it is actually quite a straight forward surgery with a high success rate, esp in the UK. Our son had a VSD, an ASD and multiple leaking valves within his heart. These were all fixed very successfully. We have many friends with children with Down syndrome who have also had open heart surgery, many for AVSDs,who are thriving now. Our son is 3 and has a cardiac check up every year, and that's it. He goes to gymnastics, football and runs around the park the same as all his friends. He can tell you the alphabet phonetically and normally, he can read some words (phonetically and sight words) he can count to 10 in Welsh and French and can count to 100 in English. He has a fantastic sense of humour and makes friends wherever he goes. He's a very clever boy who is like a sponge for information and we wouldn't change him for the world.

I only say all this because when we found out about his diagnosis, almost all medical professionals and the ARC literature we were given was very doom and gloom and we were so glad we found the other side of the story elsewhere before we made that decision.

I would strongly encourage you to look up the charity 'Positive about Down Syndrome'. There is so much information and parents stories on there and we have found their charity an absolute godsend.

Well you're not the one doing it are you. FFS this is the pregnancy choices board. Not the 'let's have a robust discussion about abortion' board.

Sorry OP nothing to offer but sympathy. You absolutely must do what you feel is right and not feel guilty about it. Presumably you'd be given steroids to help healthy twin's development should they be born early? A 1% risk sounds worth taking to me, and aiming for 30 weeks.

@unicormb really insightful.

Op I'm sorry your in such a horrible situation. Only you can make peace with it. I was in a position where I may have had to abort me of my twins, (un)fortunately I went into labour at 31 weeks and they both survived and are thriving. No one can tell what will happen and it's beyond difficult.

@unicormb I can see what you're saying and why you feel so strongly and yes the "healthy" baby may end up with a disability but this is such a hard decision for the OP.
I just find the whole Down syndrome child, term awful.
I do however respect the fact that everybody has a right to choose what is best for themselves.
My sister had a medical termination due to her baby having Edwards syndrome. It was traumatic but the right thing for her to do.

Thank you @SomethingNastyInTheBallPool , apologies OP. Like the NICU nurse up-thread mentioned, I was thinking about having to carry both babies after the termination until delivery

I'm sorry but this is a completely thoughtless thing to say there are not many people who'd love to parent a child with downs, it can represent a lifelong sacrifice to the care of a poorly child, who becomes a poorly adult unable to ever live an independent life. Many parents to adults with additional needs spend their later years agonising over who will care for them when they are gone, and neglect their own care and health trying to care for an adult with additional needs while becoming elderly themselves.
This is NEVER an easy decision and OP is clear they have agonised, why would you guilt trip OP over what is already an incredibly, incredibly tough decision?!

@KweenieBeanz I don't know what percentage of babies with DS who are put up for adoption get adopted, but I do know a lot of people in my DS Facebook groups whose children are adopted, so it definitely happens.

It's not so much guilt tripping though really. I mean the OP has decided she doesn't want a disabled child so will abort one. However, has she actually considered the other might have disabilities as the result of a termination at so long in the pregnancy? What happens then? What happens to that child? Would OP consider adopting the child at that point? If so, why is it not an option for the other child?

I have a DS with ASD and other disabilities.

Had I known prenatally what the whole family, including him, would go through I would have terminated. No question. And on the whole i am anti abotion full stop.

All the wonderful sucess stories about are wonderful. But they don't relate to every child. This isn't about not valuing life? It's about understanding suffering

Those of us that do raise DC with SN are nothing special. We keep putting one foot in front of another because we do. So if you ended up raising a child with SN, you would do it.

But you do have a choice to reduce the odds of that happening and I don't think anyone has the right to judge you taking that choice.

The state of some of these replies. I’m sorry you’re having to read these OP.

OP didn’t ask for any of your “insightful” inputs into abortion or ask if she should adopt ffs. Wind your fucking necks in.

Surely birthing a living (incredibly poorly) baby and then having them adopted would be worse?

But I'm guessing before adopting, those parents were able to get some sense of the extent of disability those children had. OP could give birth to a child with extensive disability who is extremely unlikely to be adopted and could spend their life being cared for in an institution?

My concern OP is that when you talk about the decision you say you’re doing what’s best the family. The implication being that the family couldn’t cope with a child with DS.

However, I wonder if you have thoroughly explored how you personally will feel about having to terminate one twin in the womb and then birthing it dead along with the other live twin? And what if that twin turns out not to have DS? Forgive me if you’ve covered all this already with a counsellor. But it’s important that you’ve analysed this ahead of time. Some people can blindsided by horror and remorse and it can take a long time to get over.

I’m not making any judgement in any way it’s a very challenging situation to be in. That’s why it’s super important to have considered all eventualities ahead of time.

And I'm not going to comment further as I think this is derailing OP's thread which is about a very different decision around timings.

There is already an existing child to consider. When I was pregnant with DC2, I massively considered the effect on DC1 and that included the possibility of known disabilities that would require life long care. Why would I choose to burden my first child with that? me not others.

So the OP isn't just considering the developing pregnancy- she's likely given plenty of consideration for how this would effect her existing child too.

I’d wait a bit longer if you can. 30 weeks is still so early and the risk of cerebral palsy will be higher if your other baby is born. Bleeds on the brain are more common at this age.

Agreed. It’s a no win situation where all options are awful.

@KweenieBeanz Not necessarily. In some cases, the adoptions were arranged before birth. I also think people who don't know much about how heart problems affect children with DS may be overstating the medical side. My DD was born prem with multiple serious heart defects. She had open heart surgery at 6 months, spent a week in hospital and hasn't looked back, cardiac-wise, since.

But I'm not sure this is particularly helpful to the OP. I'm more concerned with the reality of giving birth to a 32-weeker, and the trauma to the OP.

@SomethingNastyInTheBallPool You're not talking about the UK then, if adoptions arranged before birth. That doesn't happen. Full stop. And is irrelevant. OP has decided to terminate the twin with T21, she's asking when to do it, from those who have been through it.

I think it's an incredibly rare and sad situation all round, and that formal counselling by the team looking after her is the only way. I'm sorry this is happening to you, OP.

@theinkblacktart I am talking about the UK.

COULD. 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. Like a PP said, an abortion at 30 or 32 weeks is really, really big deal. It's so traumatic and awful for the woman - and that's when they're not a twin being delivered with their other living twin, which will only add to the pain. At 30 or 32 weeks, the baby will be fully formed and able to survive. Going through with this COULD potentially cause her and her family severe trauma. So if you're going to say the 'coulds' from your side, other people can discuss the 'coulds' from the other perspective to get a more balanced opinion.

If the second baby could also have Downs Syndrome, this really adds a huge element to it. Imagine if the second living baby was born with Downs Syndrome too, after you'd aborted his sibling. This would be so awful for the family - the abortion and pain that came with it would have been for nothing. And it would probably be difficult to raise the baby and not think about the aborted sibling. There's just a lot of issues with this that could cause long term harm to the family and I don't think just not mentioning these is the kind thing to do?

Actually, @theinkblacktart - now I think about it, they were foster placements that turned into adoptions. Other adoptions were put in motion shortly after birth. There's one woman I know whose DD stayed with her foster family until after her heart surgery and went to live with her adoptive parents once she had recovered.