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.

[secreticanttell]

I'm so sorry you're going through this. I can empathise. I had my second child some years ago and the day after she was born was told she had Down's syndrome. I had had the nuchal, was relatively young and it came back very low risk.

I chose, after a lot of soul searching, to place her for adoption. I knew I was not the best person to care for her. I have contact with her still and she is happy. I love her but I don't regret it as I can see she has needs I would struggle with, that are getting more pronounced as she gets older. You have to do what is right for you.

This is a big skeleton in my closet. Not very many people know. People judge.

Look after yourself and I'm so sorry this has happened for you

[sausagepastapot]

Absolutely do what is right for you. x

[ThirdTimeLuky]

@secreticanttell thank you for sharing this. you should know that you sharing this now helps a lot of us. today i have been told that the cultured results confirmed the baby had t21. i had to hear it. it wouldn't change anything, i had to let my baby go two weeks ago but i had to know. they said the report has gender on it and asked whether i want to see it. i said please send it as is. i will at least have the option to know. maybe tomorrow i will learn if it was a girl or a boy.
what would i do if i had a baby with down syndrome without knowing, like you did. i would struggle. i would struggle so much. i don't think i would cope. i hate it when people compare it to having children with all sorts of issues and say if you cannot cope with things, then you shouldn't have them (other disabilities that can occur later in life or learning issues that can appear that wouldn't be diagnosed during a pregnancy, blah blah blah blah blah). how can one woman be so judgmental to another who had to make the toughest decision to let go of a pregnancy, because of a diagnosis that has been made, and because they knew they couldn't possibly take care of this baby, themselves, and/ or their existing children if any? This is the real cruelty, in my view, "judgement".
Again thank you for sharing.

[secreticanttell]

@ThirdTimeLuky thank you for that lovely message. I carry a lot of guilt and never ever talk about this to anyone so that has really meant a lot to me. I'm sorry for your loss. And yes some people have very strong views. I have a son also who has autism so I do have some experience of finding out later that something is 'wrong'. I am fortunate though in that he is relatively high functioning.

Down's syndrome is a spectrum and those you see who are able to hold jobs or get married are unfortunately in the minority.

[AngelDelightUK]

How are you coping OP? Thinking of you

[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.

[Honeywort]

for you. You have been very brave to share your story and I am sure it will help others grappling with similar decisions to make what is the right choice for them in their particular circumstances. Thank you

[evenmoreforthemoor]

@Giantguineapig

I had a medical termination at 32 weeks for a twin baby who had severely bad complications and would have died at birth.

I also work with children with learning difficulties and see what their families have to face, their parents, their siblings.

I felt relief when the genetic results told me what was wrong with my child because I really had no choice. However, in the same situation as you, I know I would have done the same thing.

I felt some comfort that all my baby ever know was being in my womb, warm and cared for. Life is not measured by quantity, but quality and in some ways, that is a perfect life.

Take care x

[greenspacesoverthere]

I am in tears. What an extraordinary group of people you all are. Such strength and grace.

My love to you all

[Sexnotgender]

I’m so sorry for your loss. I would have made the same brave decision

[TheLovleyChebbyMcGee]

I'm so sorry you've gone through this, it must be such a difficult thing to go through, take care, Xx

[HollyBollyBooBoo]

I'm so sorry for your loss Op

[Hercwasonaroll]

OP you are so brave for making this decision which cannot have been easy. Sorry for your loss and I hope you are treated with kindness x

[FlatScreenTV01]

Does anyone worry what will happen to their none disabled children when they die?

[TildaTurnip]

@PyongyangKipperbang

My son has a birth injury disablility. Couldnt be predicted or prevented.

I adore him, he lives independently and has a job.

Would I have had him if I had known how both our lives would have been? No. And yes, I have told him this. He has said that he would not want a child of his to live his life. We are both grateful for his life but we also know what it has cost us both. Shame on everyone guilting the OP.

I would do the same, and I wish you love and strength through the coming days, weeks, months and years

I find this astonishing. You told your son you wouldn’t have had him if you knew he’d be how he is?

[bookworm14]

I’m so sorry, OP. I would have made the same decision as you. I have a sibling with DS, autism and other health problems and know that I absolutely could not cope with a child with that level of disability. You need to do what’s right for you and your family.

[evenmoreforthemoor]

@TildaTurnip

It take a special kind of human to come on a post like this and negatively comment on others ways of dealing with unimaginably hard life events.

[stairway]

Sounds like you have made the right decision for you. My Auntie has downs and it has been hard on my grandparents all their lives having to worry and care for her even when they were in their 90s. It’s not for everyone.

[Giantguineapig]

@FlatScreenTV01

Does anyone worry what will happen to their none disabled children when they die?

No. I hate to think of her wanting me and me not being there, but the vast probability is that she will be able to make decisions for herself and advocate for herself. The vast probability is that my son would not have been able to do that.

[Hillwalker1]

I did the same at 18 weeks. We made the decision straight away and still feel it was the right one. It was difficult. I didn’t want to talk to anyone at the time and returned to work a week later. Thinking back, I should have taken the hospital offer of support. Look after yourself x

[Roselilly36]

so sorry for your loss. I think you made the right decision for you and your family. The toughest decisions are always the most selfless. I hope you get the support you need to move forward with your life. Very best wishes for the future.

[GoodbyePorpoiseSpit]

@TildaTurnip yes: I guess some people can deal with complexity and have challenging difficult conversations with people they love, free from judgement and with intelligence.
Not you though, eh? So probably best you leave the thread.

[Mandalalorianna]

I was in your position several years ago. Such a tough decision, but you have to do what's right for you. I work with adults with LD. The fights the families have with various agencies, and the hoops they have to jump through to get support... Too much. Good luck.

[EssexCat]

[quote ViciousJackdaw]Would people please pay attention to what the OP says. She has made her decision. Perhaps people think they are being helpful, I don't know. What is obvious though is that all this pressure to reconsider is unfair, unhelpful and downright unacceptable. So stop it.

OP, I know this probably sounds like empty platitudes but I'm sorry for what you are going through. A good friend had to TFMR (Patau) a year ago and like Bickles above, found the ARC to be very helpful. Her little boy is not treated as a secret or as something not to be mentioned. He is remembered and talked about often. I won't lie to you, she's still not really come to terms with it all (do you ever?) but with the help of her GP and ARC, is starting to view it as the merciful act of love it was.

I suspect she'd advise you to talk about your baby. Never feel as though you have to keep quiet and suffer alone. Don't ever think loved ones are tired of hearing about it and above all, never pressure yourself to 'get over it'.

Wishing you every strength.

www.arc-uk.org/[/quote]
I couldn’t agree more with this. If the OO had asked for opinions on what to do then maybe some of these posts would be appropriate.

But she hasn’t, she has come needing understanding and support. If you can’t offer that (and unless you are offering respite care or actual tangible support, you’re not offering support by urging her to reconsider) then what is the benefit?

[Hercwasonaroll]

Does anyone worry what will happen to their none disabled children when they die?

This thread has really brought out the dickheads.

OP I admire your grace and patience in dealing with them.