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.

[user1471448866]

So very sorry - an awful decision to have to make. You will make the decision that is right for you and your family. Wishing you all the strength that you will need over the coming days and weeks x

[Readandwalk]

Stop it. I had an abortion while living in Iteland. The right decision for me at the time. I did not advocate in my posts going ahead with a pregnancy. I simply gave my experience of teaching Downs kids. So stop it.

[sickofthisyear]

@Giantguineapig I'm so sorry you've found yourself in this situation. We underwent a TFMR at 16w just last week for the same diagnosis picked up on the NIPT at 12w. It's been a long few weeks to get the definite diagnosis and move forward when we know the NIPT is so accurate.
Heartbreaking is the best word to describe it, but this particular diagnosis and decision comes with SO many other emotions which I am only just realising and sorting through.
The ARC forum is great although I haven't posted yet. MN also has a board for antenatal tests and also a pregnancy loss section where some people have similar stories. But we seem to be a small (or silent) group- and many don't feel they can share their experience openly for fear of someone's response. I have read stats saying that the percentage of people who would choose termination (I prefer 'compassionate induction') increases with the likelihood that they are faced with the decision. ie it's easy to say you would never terminate for DS until it's a reality you're presented with. Then more people change their minds. Basically no one outside you and your partner can ever fully understand your choice and how hard it is until they've lived it. Please do PM me if you want to chat or have any questions. Hope you can sleep. Hugs

[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

[Straysocks]

It must be a very painful place that you are in. It seems like you want to have a child but the possibility of having a child with DS is frightening to you. If you want to talk to people who have been in your position and really can give expert advice and information then the Downs Syndrome Association have lots of info on their website and a helpline. Remember, most people don't expect a baby with DS, it's a random chance (as is winning the lottery) so they would understand your position.

I don't find the opinions on this thread very representative of the life I've had as a younger sibling to someone with DS, it's been marvellous (we are 40s/50s), I'm so grateful for and to my sister. I've known a lot of other happy families too. It's a really different world to for babies, children, young people with DS and families now, so much more research and hugely different expectations. It is special. I don't really think we can view the future for people with DS on the basis of the past when very little was known, developed or expected. It is really, really different now.

If you want to talk, the DSA may be helpful. It's ok to explore with people who know. Good luck.

[Bickles]

I’ve been where you are now and made the same decision. It was the right one for us. ARC are great. Take care

[Ghosts2020]

I had an abortion whilst at university a few years back and that really messed with me but financially and for my own mental health was the right thing to do (I had been with my partner 2 years by that point I had started uni and he was only working part time in our small flat and was on birth control that failed) . I accidentally got pregnant again 9 months later, after changing contraceptive so my second one had failed, I considered keeping the child this time, but when I eventually got to see a doctor due to my gp being awful I found out I was nearly 16 weeks, that I was pregnant with twins with a high possibility of downs syndrome and miscarried not long after, it was a a really sad time for me, but looking back we still weren't ready and had issues to work through, now finishing my higher studies I feel ready so do whatever feels right but make sure to think about your welfare and put you first.

[Rangoon]

I would have a termination without hesitation. As for the Irish, my mother who was undoubtedly Irish born and bred and who was an adoring mother and grandmother told me that if I got bad news from the amniocentesis I should have a termination. She also remembered without any fondness the days of no contraception in Ireland and women just worn out having child after child. Those people talking about the wonderful lives that some people with Down Syndrome have are not going to be the ones looking after your child. I believe that people born with Down Syndrome should have the best possible lives they can but I would never choose to be a parent in this situation.

[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/

[MisfitRightIn]

I’m so sorry for the choice you’re having to make. While I hear and understand that many people have wonder relationships with others with DS, I also have experienced the other end of the spectrum. My mother worked in a respite home with some permanent residents, for adults with special needs (I volunteered there for many years), and some people with DS were much lower functioning than the general public are probably used to seeing.

I’m sending you some virtual support, and I hope someone, somewhere, is helping you get through this. This is so hard.

[Blueberries0112]

My son is 19 years old today. When I was pregnant with him, the doctor told me he was in high risk for Down syndrome based on MY blood work, after doing further testing like ultrasound, he showed no facial or body features proving he has Down syndrome


He doesn't have it. The only way to find out for sure is test his dna

[Blueberries0112]

@Blueberries0112

My son is 19 years old today. When I was pregnant with him, the doctor told me he was in high risk for Down syndrome based on MY blood work, after doing further testing like ultrasound, he showed no facial or body features proving he has Down syndrome


He doesn't have it. The only way to find out for sure is test his dna

It was the same type of testing you took. It is not always accurate. You will need further testing

[WoobyWoo]

So sorry op

I underwent invasive testing for downs and would have chosen the same path as you had my results been different. I think you have to keep in mind whatever decision you make now is the one which is right for you and your family at this time. It’s not easy, wishing you lots of strength to get through this time.

[BigBigPumpkin]

So sorry, OP

[Eekay]

OP what a heartbreaking situation. Wishing you strength.

[Ghosts2020]

@Rangoon I'm also of Irish descent and Catholic and I still feel abortion is valid option for those who need it

[oakleaffy]

@Giantguineapig

A Neighbour where we used to live had a Downs child and was so appalled that she and her husband gave the child up for adoption within weeks.

I was a bit judgemental at the time.but then learned that the neighbour had grown up alongside a very disabled person, and said it had a very negative impact on her family.

She didn't go for any tests...Would have saved much anguish.

Everyone is individual..if you cannot handle a potentially very disabled child > adult, then that is up to you, as it will be you who does all the caring.

[EmmaGrundyForPM]

OP how hard for you

I would have done the same.

[Kalula]

@Heartofglass12345

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?

Bringing a child into the world knowing it has a severe disability (and Down Syndrome is, because no matter where they are on the spectrum, they still need some time of carer or guardian for the rest of their lives, not to mention risk of Dementia at 40, heart valve problems, etc etc) is completely different from the child having a disability later on that couldn't be known about or prevented.

[Kokeshi123]

I'm so sorry, OP. That sounds terribly painful. I would have made the same choice too: the issues about early onset dementia in at least half of people with Downs would have been the clinching factor. It can lead to some heartbreaking situations, with elderly parents unable to cope and siblings facing an impossible burden. I hope you can find some time and space to grieve as this was a situation where either choice was going to be very hard indeed.

[Kalula]

@CrimsonCattery

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.

Well said! I think people romanticise the view of DS children as being sweet, 'cute', etc. They can NEVER lead a 100% independent life. No matter how functioning they are. They are predisposed to having Alzheimer's at 40. Hole in the heart problems, bladder and bowel problems, eyesight issues, and that's only mentioning a few - anyone who has worked with people with DS knows it is not the picture some people wish to paint it as. It is also unfair on siblings/relatives left behind after the main carers/parents death who then have to alter their life around to take on the sibling/relative with DS. It is simply not fair on them, and not enough people stop and think about that.

[Kokeshi123]

Blueberries, are you sure it was the same kind of test?

The NIPT has only been used since 2011 and you say that your son is only 2019.
www.ncbi.nlm.nih.gov/pmc/articles/PMC4303457/

[Kokeshi123]

"Your son is 19" I should have said. Need more caffeine....!