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Termination for Down syndrome - heartbroken

(105 Posts)
Giantguineapig Tue 27-Oct-20 23:42:25

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.

OP’s posts: |
Onehellofaride Tue 27-Oct-20 23:45:34

I have no experience but couldn’t not comment. You have to do what’s right for you but it could also be amazing.

percheron67 Tue 27-Oct-20 23:46:52

The worry for us was - as with lots of others - how will they cope when we are not here. I do feel for you.

BluePeterVag Tue 27-Oct-20 23:49:01

flowers Very sad. What is right for you is right for you.

Belle1983 Tue 27-Oct-20 23:49:04

@Giantguineapig I'm so sorry you're going through this.
I've no words of advice or anything, just wanted to say any decision you make in a situation like this must take such bravery.
Sending love at what must be an incredibly difficult time, and strength to get through the coming months x

Heartofglass12345 Tue 27-Oct-20 23:50:55

It's obviously your decision, but anything could happen to your child at any time to lead to them becoming disabled orbs w health problems.
People with Down's syndrome can live fulfilling lives, and I've worked with many who have been fine health wise and perfectly happy.
My sons were both born premature, my oldest has been diagnosed with autism, and my youngest has now been suspected to have autism too.
You can't predict the future, but it's only a decision you can make. Do you have a supportive partner? thanks

Heartofglass12345 Tue 27-Oct-20 23:51:39

I have no idea where orbs came from, that was meant to say or blush

CrystalTits Tue 27-Oct-20 23:53:27

@Giantguineapig I’m so sorry. You are doing the right thing in an incredibly tough situation. Has anyone mentioned ARC to you? They can offer support and they are brilliant: www.arc-uk.org/
Thinking of you flowers

MrsRogerLima Tue 27-Oct-20 23:55:43

I would do the same op.

I'm so sorry you have had to make this choice. 💐

movingonup20 Tue 27-Oct-20 23:59:42

So sorry but do get the full picture, adults with downs can live independently, my friends dd has a flat and a boyfriend! Downs is not the same for everyone though, some have other conditions. You need to do what is right for you though

Augustbreeze Wed 28-Oct-20 00:03:06

My brother, who has Downs, is one of the people I love most in the world.

LoganRoy Wed 28-Oct-20 00:04:55

As a person close to someone with Downs, you absolutely have to do what’s right for you. flowers

TheVanguardSix Wed 28-Oct-20 00:08:42

It is the hardest decision you'll ever have to make. flowers
If you decide not to carry on with the pregnancy, I highly recommend plugging into the ARC forum. It was a real lifeline for me. www.arc-uk.org/for-parents/arc-forum

CrimsonCattery Wed 28-Oct-20 00:22:49

Why are people trying to guilt OP with stories of what could be? She knows the decision not to continue is right for her. Having a child with known disabilities (up to and including fatal) is a huge risk to the wellbeing (emotional, financial and possibly even physical if there is aggression) of herself, her existing children and her OH.

You must be heartbroken OP. flowers

Kanaloa Wed 28-Oct-20 00:24:36

How awful, hope you’re okay. I’m not surprised you’re miserable, this is a horrible situation for you. Hopefully you have people around you for practical support, the only advice I could possibly give you is to accept/allow yourself to be miserable while you come to terms with everything.

Paperdove87 Wed 28-Oct-20 00:26:42

I was in a similar position a few years ago and made the decision to terminate.

Either way it will feel awful but you will get through it whatever decision you make. It was definitely the right one for me although hugely upsetting at the time. I recommend getting some counselling whichever way you go.

I know lots of lovely people with Down's syndrome. My brother has other SEN and is in lots groups with a range of people with a wide range of abilities. I made the decision mainly because while I love him so much, it has been really difficult at times growing up with a sibling with additional needs. I still do some of the caring for my brother, well into my 30s and when my parents are no longer able to sort his care, that responsibility will pass to me. I want to avoid as much as I possibly can passing on a responsibility like this to my other children, or onto the state and leave a child of mine in state care-the thought frightens me.

Good luck with your decision.

Yellownotblue Wed 28-Oct-20 00:26:50

I would also have done the same OP.

Very sorry you have to go through this, I would have been heartbroken too.

holb54 Wed 28-Oct-20 00:27:10

Can't offer advice but take care of yourself during this time.. you need to make the best decision for you, whatever that is 💜

SylvanianFrenemies Wed 28-Oct-20 00:35:15

I have been there. I am sorry you are going through this. I also recommend ARC.

To those guilting the OP.... Yes, some people with Downs have a good quality of life. Like the OP, I have worked with people with LDs, including many with Downs. I never thought I'd have a termination for Downs, but taking the chance that your child will be in the lucky minority rather than suffering isn't so easy. It is unfair to try to twist the OP's arm to gamble on this. Many people with Downs have severe health problems - fatal heart issues, leukaemia, dementia, severe bowel malformations... It is OK not to want that life for your child. My baby had severe physical abnormalities and I don't apologise for not wanting to wait to lose him at 8 months pregnant, or in the months after birth. Every woman has to take her own decision.

Love and strength to you OP flowers

WhatWouldYouDoWhatWouldJesusDo Wed 28-Oct-20 00:40:52

No guilt from me, down syndrome is a huge spectrum. In my experience the happy, smiley people who have down syndrome yet live fulfilling lives are in the minority........I know far, far more who suffer crippling loneliness, early onset dementia and a multitude of health problems. A person with down syndrome is for life, not just whilst they're cute little kids. And that is a massive undertaking.

Readandwalk Wed 28-Oct-20 00:47:50

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

SylvanianFrenemies Wed 28-Oct-20 00:53:02

People with Downs are loved in the UK too.

Most people with Downs do not have the intellectual capacity to do A Levels. It isn't because they arent loved or cared for. It is because they have a pervasive disability that affects cognitive functioning and presents severe, sometimes fatal, health issues.

gluteustothemaximus Wed 28-Oct-20 00:57:34

Good luck my lovely. What a heartbreaking decision flowers

Yellownotblue Wed 28-Oct-20 01:02:36

In Ireland people with Downs are totally loved and go to school to the equivalent of A Level.

Well it’s a shame that the same love is not extended to girls and women who wish to make their own decisions over their body. Ireland has a long tradition of restricting the right to terminate. It’s nothing to be proud of.

Readandwalk Wed 28-Oct-20 01:04:26

Eh? Abortion is legal now in Ireland. What you on about?

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