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.

[NoSki]

@YouSuck5858484 dont be an arsehole to people going through very traumatic times making the right decision for them. Posting on an old thread just to inflame people. You are not a good person. You are not nice. You are not helping anyone.

[Smackndh]

Down syndrome is named after John Langdon Down, a British physician who was the first to classify the condition in 1866.
John Langdon Down began his career as chief physician of Earlswood, an institution for people with intellectual and developmental disabilities.
Prior to Earlswood, John Down had no experience caring for people with these types of disabilities.
But something about them interested him.
He saw their value and their humanity in a time when others didn’t. He genuinely enjoyed being around them, and he became infuriated by the way they were treated.
Corporal punishment was common, there was poor hygiene, high mortality rates, and nothing enjoyable or worthwhile for the patients to do.
John Langdon Down insisted on change.
He hired all new staff, demanded proper care and hygiene, prohibited punishment, and offered crafts and hobbies to his patients.
He took beautiful portraits of his patients, dressing them in their nicest gowns and suits, and posing them in flattering ways.
He used this portrait collection of over 200 photos to support his clinical description of Down syndrome, pointing out the physical features he noticed as well as the other clinical observations he made.

In 1868, he bought a large white mansion as a home for people with Down syndrome, rather than an “institution”.
He ensured that the mansion met the highest standards of comfort and hygiene.
All people who were brought to the mansion were privately educated.
They were taught to ride horses, garden, and craft.
Creative outlets were provided and he had a small theater built as an additon to the mansion.
This mansion was called Normansfield, and is still around today in the UK.
Now, it is named The Langdon Down Center and Normansfield Theater.

So “Down” has nothing to do with delays, or disposition, or prognosis of the syndrome. It’s just named after a really, really cool person.!

[NTScannegative]

I gave birth to my son with Down syndrome a few months ago and ended up doing a ton of research as I had low chance but was never offered the nipt test, just the other basic ones. After thorough research finding the good and bad I decided to place him for adoption as I didn’t want my toddler daughter growing up with a sibling that would potentially become a burden on her. I spoke with others who have been in the same position and they all have contact with their birth children and all even 8 years in are non verbal and have no understanding of their adoptions which says quite a lot about their levels of cognitive functioning. I think all the happy DS stories on the media are the minority. I 100% would have had a termination if I had known in advance as I know the grief from that would be way less than the grief I’m experiencing now. I think you made the right decision. Look up the mother on Reddit who wishes she could go back and choose termination for her non verbal 6 year old Down syndrome son. She listened to the rainbows and unicorns stories that a lot of those in the DS community push on expectant moms. She regrets it completely. I hope you’re doing okay and just know you made the best decision you could have in the position you found yourself in. Hugs

[Zanina]

Just reading this thread as I am currently waiting for an amnio. The responses on this thread (apart from the shit ones) have been very well written.

OP thinking of you and wish you the best xxx

[sickofthisyear]

@Giantguineapig I hope you're managing ok over Christmas? I've found it very up and down.Thinking of you- and anyone else in this situation.

[RainMoon]

@Giantguineapig
I sang along in my head for you when you posted the sailing song.
So much love sent

[mamaoffourdc]

Sending huge amounts of love to you x

[Giantguineapig]

I played Tears in Heaven for him yesterday. That was the song that I sang to him as I held him. The next song that my playlist threw up was Sailing, which I've not really heard before.

I am sailing
I am sailing
Home again
'Cross the sea
I am sailing
Stormy waters
To be near you
To be free
I am flying
I am flying
Like a bird
'Cross the sky
I am flying
Passing high clouds
To be near you
To be free

Sail on, my beloved boy.

[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.

[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

[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

[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.

[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".

[BadEyeBri]

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

[m0use]

FlatScreenTV01 you are utterly disgusting

[ivfbeenbusy]

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

[Sexnotgender]

Reported the vile comment.

[RainMoon]

@Notdeliasmith no problem
Absolutely agree

[Notdeliasmith]

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

[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.

[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]

@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.

[blue25]

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