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.
Pregnancy choices
Termination for Down syndrome - heartbroken
Giantguineapig · 27/10/2020 23:42
I can't tell you how reassuring it is to read the majority of comments on this thread- to know I'm not alone in our choice. I did research beforehand, looked at various DS websites, but felt they were (understandably) biased toward telling the best case scenario. I've struggled to find an honest account of the impact and challenges that having a child with additional needs has on a marriage, sibling, jobs and a family's mental health, (which I previous struggled with post partum). Obviously what parent is going to say they wish they had ended their pregnancy on a national website?
The problem with DS is that no one can tell you where your child will fall on the spectrum of issues- a high functioning child with minimal medical issues who can attend mainstream school is a possibility but by no means the most likely scenario. And many parents aren't prepared to accept the risk of the worst case scenario.
Having a post natal diagnosis is completely different, if that had been us we would have coped the best we can, but I'm fairly sure it would have been the end of my marriage. I sometime wished we hadn't done the test- I naturally wanted to stay pregnant, have my baby and didn't want the lifelong consequences of a TFMR, but we had the test for good reasons and had to then decide with the info we had. Having a baby with DS is only the start of the picture- we had to think long term.
Also, making this decision for the other trisomies eg Patau's is totally different. Babies with that diagnosis have a far greater chance of stillbirth and a greater than 90% mortality rate before age one. You would struggle to find a national group anywhere advocating against termination with that prognosis. Therefore it is more 'acceptable' to share that diagnosis and decision, to be consoled widely for it and to perhaps not feel the same level of guilt and shame (in my case) as you would with a DS diagnosis. I will be dealing with this largely in silence and my baby and trauma will go unknown to the majority of my friends and colleagues. I have had to 'lie' to a number of people (which is very difficult) as I can't take the risk of telling someone and be met with the same reaction that some of the posters on this thread have voiced.
@Giantguineapig I hope you managed some sleep and this thread has helped somewhat. You were brave to post. Please do contact ARC and again, the offer to chat is there if you have any questions about the process ahead. (Sorry for the long post!). 
Couldn't read and not comment from me
It will b the hardest decision of ur life but only u can make it I wish u all the best not matter what you choose
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I would do what you’re doing OP. For the sake of my existing children.
I have a close relative who has a child with DS. She’s 7 and she is beyond adorable. But she has so many health issues. Serious heart problems. She’s almost completely deaf. Behavioural issues. She will never live an independent life. My relative had a second child really because she needed to know that someone would be there for her daughter when she was gone. She was quite open about that at the time.
I had my eldest when my relatives little one was around 2. They offered us the test (where they take blood and measure the fluid at the back of the baby’s neck?) and I took it - in fact when I said I had a relative with downs, they practically told me I was having it. I remember my horrible sister in law (who was pregnant too) making horrible passive aggressive remarks. “Oh well we didn’t have the test. We decided not to because it wouldn’t have made any difference to us what the outcome of it would be 😇”. She’s a nasty, clueless fucker.
to you OP.
I am so sorry, Giantguineapig. Only you and your husband know what you can cope with, it's nobody else's business. Having a termination is sad but you will come to terms with it in time.
You talk about it may be your last opportunity to have 'another child', which sounds as though you already have one. You are blessed! Enjoy what you have and make the most of your lives.
All the very best.
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