Termination for Down syndrome - heartbroken

[Giantguineapig]

Name change for privacy.

I'm at the end of my first trimester, and I've had an NIPT, which shows a very high risk of Down syndrome. I'm waiting for some more invasive testing to confirm, but I've been told that with the new NIPTs, the likehood of it being incorrect is very very low.

I'm sure that termination is the right decision for us. I've worked with adults who are very disabled in the past, and I know that you can lead a fulfilling life with serious disability, but I've also seen how hard things can be for parents of disabled adults. I know that people with Down syndrome can be healthy, but I also am aware of the risks, and that path is just not for me.

This is pregnancy was probably also my last chance to have another child. I've been struggling with infertility, getting older, and not sure I want to go back again.

I don't know what I'm hoping to achieve by posting. I'm just miserable.

[Cheesecake53]

[WhyNotMeThough]

Thinking of you now in your recovery OP, both physically and emotionally. I'm glad you had a chance to hold your son, I hope that helps in some small way.

[BastilleBastille]

You must do what’s right for you. Don’t ever let anyone make you feel bad for it. ❤️ Good luck OP.

[Sewsosew]

[AntiHop]

@Giantguineapig

Thank you to everyone who has shared their stories.

The final result came back as complete t21. It was almost a relief in a way - I was terrified of having to make a decision for a baby who had mosiac down syndrome; it would be even harder to tell what kind of life they might lead.

I had an induction at 18 weeks. I got to hold him. It was so, so hard, but not as impossible as I'd imagined.

I love him so much. I miss him. There's a part of me that keeps wanting to go back to the hospital and get him. I wish I could have protected him from the world. I wish disability support was better - we've come a long way, but it's got a long way to go, and is likely to suffer with the current economic situation.

Yes, I have a older child. It's partly for them that I made this decison. I had a family friend who was a carer for his brother, who had a moderate intellectual disability. Their parents died young. I watched as this friend's career, relationships, dreams, and aspirations, were all sacrificed to his brother's needs. I didn't want to do that to my own child.

I would have made exactly the same decision as you. We started ttc number 2 when I was 42 years old. I made the decision in advance that I would terminate if there was a high chance of downs or other chromosomal abnormalities. Like others on this thread, I know too well how tough life is for people with such disabilities, and for their families. I've had a lot of difficulties in my life, I've had my fair share. And I didn't want that for my existing dd's future.

I have a friend with a child who has downs syndrome. She chose not to have any tests. She has a big family, including several siblings, and that child will have a lot of people looking out for him for the rest of his life. She is at home with her kids fulltime. I have to work full time, and have little family support. I've no doubt things are tough for that family though.

[Giantguineapig]

I'm sure, for them, continuing the pregnancy was the right choice. All of this had really made me feel that only the person making the decision can really understand what goes into the decision.

[Giantguineapig]

I read that I'm grieving for three children. For the healthy boy that I dreamed of, of what he would have been like without the extra chromosome. For the best case scenario - the boy who still managed to finish school and live a full life. And finally, for the boy who had whatever complications he had, even if those were awful.

I'll never know how it would have been. There's a poem called "the blue house". It talks about how, when you make a decision, there's always the other path that you could have taken, and this is "the sister ship". You never get to know where the sister ship sails. I feel as if my baby is just there, on the sister ship, in the next universe over. I wish I could see him, one more time.

[Notdeliasmith]

@Giantguineapig
Very elequently put. I've heard people say similar things about other types of grief

My thoughts are with you and I hope you are looking after yourself x

[blue25]

I have a niece with Down Syndrome. She’s amazing & lives in a supported flat. She’s incredibly loved by all the family.

[Notdeliasmith]

@blue25

Sorry but why is that relevant on this thread? This thread is supporting an OP who has already made her choice and has acted accordingly.

[RainMoon]

@Giantguineapig I couldn’t read and not post, it felt wrong to not acknowledge your lovely thoughtful posts. You made the right decision for you and I would have done the same.
I have a genetic condition that can’t currently be picked up. If it could I would screen embryos, or I would screen pregnancy and terminate for it. People who have children with this condition can’t imagine terminating, as to them they see the child they already have they feel you are saying their child shouldn’t exist. The same with quite a few vocal supporters. It’s completely different when you are on the other side of a pregnancy, but those with children can’t see that as they can’t in their heads understandably vocalise they don’t want their own child.

I told my mum it would have been fine if she had terminated me, I wouldn’t have known any different, but of course she now couldn’t imagine doing that as I’m an entity she wants to stay here in this world.

[Notdeliasmith]

To be honest it doesnt really matter what any of us would do because we are not @Giantguineapig. We are not in her shoes, we dont know her life and circumstances. We can just believe her when she says this is the right choice for her.

In the same way lots of people have a good experience of having kids as a teen pregnancy, does not mean that every teen should then not be allowed to make the choice for themselves. Just because my mum's cousins' next door neighbours wife doesnt regret it doesnt mean its right for me

Even choices that we know are right for us, can be impossible to make and still be very difficult to process.

[Notdeliasmith]

Sorry @rainmoon
That was a cross post and wasnt referring to your post

[RainMoon]

@Notdeliasmith no problem
Absolutely agree

[Sexnotgender]

Reported the vile comment.

[ivfbeenbusy]

Also reported - just hope the OP doesn't read it x

[m0use]

FlatScreenTV01 you are utterly disgusting

[BadEyeBri]

OP I've just read this, tears in my eyes the whole way. How brave you've been.

[Hercwasonaroll]

Reported too. What a vile comment @FlatScreenTV01

Did you never get told "if you don't have anything nice to say, don't say anything at all".

[feellikeanalien]

OP I really feel for you. I know how hard it is to be faced with that decision. The important thing is that you made the choice that was right for you and your family.

Ignore all the idiots who almost certainly have no idea what it is like to be faced with having to terminate a wanted pregnancy and certainly no idea of the reality of living with a child with a severe disability.

Wishing you all the best.

[butterflysalami]

Hi OP

I'm so sorry for your loss and all you are going through right now

I made the same decision as you a few years ago. It was not a decision I ever thought I would make but when faced with the news, we chose what we thought was best for our existing family (like you, I had an older child too, who I knew would be left responsible for his younger sibling when we were no longer able to be). I was also very aware of the full spectrum of outcomes, having worked with people with disabilities.

It was so hard. And made even harder because, as others have said, it's not something I felt I could share with people easily or readily, for fear of judgement. Only family and one old friend know, even to this day. I didn't even come back to anonymously update the mumsnet thread I'd started while we were waiting for results.

I also felt conflicted about feeling grief - there was a part of me that felt it was somehow self-indulgent or hypocritical to grieve for something I'd chosen. But I did eventually allow myself to grieve and found ARC so amazing and helpful with this.

Thinking of you, OP. Thank-you for starting this thread to allow some of us to share our stories and I wish you and your family all the best as you make your way through this difficult time

[butterflysalami]

PS sorry I hope my thanking you for starting the thread didn't sound insensitive and hope you've been comforted by some of the responses you've received

[Giantguineapig]

Thankyou Butterflysalami, for your lovely post.

I did not see what FlatscreenTV01 wrote - it can't be worse than anything I've thought about myself.

I had the same guilt/shame about having chosen it, too. I've just listened to the play 19 weeks on BBC (which is about having a termination for Down's at 19 weeks), and many of her feelings resonated with me. The playwright tells the story of her uncle with intellectual disability, who seemed happy enough, and of her grandmother, who gave up everything to spend her whole life caring for him. As much as I hate to admit it, this is one of the scenarios that I was frightened of. The work of caring for a disabled child usually falls to the mother, especially as the child gets older, and the child's peers become more independent. As a result, many women give up work or other roles, or limit them significantly. Surely a mother would die for her children - what sort of a mother am I if I would not spend my life caring for one of them? I am, however, more than a single role, and I know that I would come to resent my son if the rest of my life was about caring for him. I did not want that for him. He deserves to be loved.