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.

I’ve seen first hand the good and the bad of families with children who have downs. It’s a very personal decision what to do and is not something anyone should commit to (either way) without trusting their own gut feelings. Do what your gut says OP.

I would do the same thing OP.
Sending you lots of love

Op I have made that decision. I have relatives and friends with very disabled adult children - they are wonderful individuals and families but the reality of day to day life especially as the parents age is punishing and emotionally tough. The support started to fall away as they entered adulthood. The most important thing to remember is there is no right or wrong decision the important thing is to make a good decision. ARC really helped - we were not alone. I never forget the child I didn't have - I think of him every day and he is part of our family. Xxxxxx

Sorry to read of your pain filled situation guinea pig.
My little brother had Down's Syndrome (he died in his early 40s after lifelong health problems)
We absolutely adored him.
But I always knew without doubt that if I was ever pregnant and tests revealed DS, that I would definitely not proceed with the pregnancy.

Op I made this decision in 2012, no part of it lightly. I used ARC and they were a fantastic support. I still love and think of my first baby fondly, but I have never regretted my decision. Be kind to yourself these next few weeks.

wish posters wuld stop with the lots of lovely people have downs scenarios

this is her life not yours stop guilt tripping

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!).

Yeah you are right, the test I took based on my age and my bloodwork it was a Down syndrome screening with a very high risk for Down syndrome. I would still do further testing seeing this test is not a diagnostic test and still can be false positive

sickofthisyear

@Blueberries0112 the NIPT test on placental DNA is completely different from the combined screen done on the NHS using your age, nuchal Translucency and bloods. That does have a high false positive rate and causes a lot of unnecessary lot of worry for women.
Different NIPT tests vary slightly, but overall the false positive rate for DS in women in the age group of OP and I is less than 1%, with some studies saying 0%. For younger women with a low pre-existing risk it is a bit higher and for other trisomies.
For me with the reading I'd done I knew my NIPT (IONA) test results were a diagnosis and it was very hard when people tried to tell me all would be well and it might be wrong. Obviously you cling to any hope so we did continue to invasive testing, but we knew the outcome really.
We don't make these life changing decisions lightly or without a LOT of research.

All I can offer is full support that you are making the best decision for your family, you must be in turmoil 😢 but if you got pregnant it may happen again, or you could adopt or foster potentially xxxx

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

Ohhh that is awful OP. For me what would break my heart is out living my own child I would never want to see that day.

I don’t know what I would in your shoes as it would have a huge impact.

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

Some lucky ones do. Some die before then, some have severe learning disabilities, autism, various other physical and intellectual problems. It's no different in Ireland than anywhere else.

you’ve made the right decision OP. I have a family member with DS and watching what her parents have gone through with her is heartbreaking

@sickofthisyear I think I just found my person.

Today, I had a TFMR due to T21, exactly at week 15. And every single word you wrote in every single post above, I resonate with, and I've been speaking to my husband to about.

I've just received access to ARC forum and I felt exactly the same, going around the stories section of their website first and then forum. You are so absolutely right, everyone talks about terminating in the cases where the baby most likely wouldn't survive. Making that decision, and making the decision to terminate due to Down is a completely different scenario. I also feel alone. I actually wrote about this to ARC and they have responded in a very compassionate, and understanding way, acknowledging the secrecy around these cases... They are aware, I'm happy I found them, but this doesn't change reality. As you said, no one would understand TFMR until they are in the shoes of a T21 diagnosis. Once can always justify why terminating a baby who would never live. So it just upsets me to see these "stories" saying what a difficult decision it was. I'm sure it was difficult, it's a loss, but eventually, if the baby unfortunately will pass, it's actually not a "decision" or "choice". It's just making it faster.

I just cannot express how good it felt to read your comments.

THIS
"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."

THIS
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.

AND ALL OF THIS
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.

It boils my blood when a certain celebrity advocates about the wonderful life her child with Down Syndrome is living. She didn't know until she had the baby. Irrelevant.

I just to quote your words as they are so true. I know this is the right decision for me, but my guilt will always be different to other parents terminating for fatal conditions, because of this silence around it.

@Giantguineapig you did the right decision too. We are all here for you.

@ThirdTimeLuky - I've only just seen your post as my account kicked me out a week ago 🤷🏻‍♀️ I'm sorry you find yourself here but glad my ramblings helped a bit. Please do message me if you want to chat  @Giantguineapig I hope you're doing ok. xx

Thanks everyone.

I'm actually still waiting for the termination. The early CVS showed high level mosiacism, and the final result showed complete t21. This meant that I needed an amniocentesis, which couldn't be done until nealy 16 weeks, and the inital result for that showed 90% t21 - so very close to complete Down syndrome. I'm still waiting for the final results of that. It's looking like I'll be facing a termination at about 18 weeks. The waiting has been hell, and I really hate the fact that I'm starting to really look pregnant even though I know that this pregnancy isn't going to result in a baby. I could have chosen a termination at any point, but I felt that I wanted all the information. The upside is that it's really given me time to be sure that termination is the right decision.

@sickofthisyear and @ThirdTimeLuky, what you wrote really resonated with me. The really difficult thing about t21 is the spectrum of possible outcomes. I wasn't upset by the comments on this thread talking about people with Down syndrome who've gone to uni, or those websites that make it look so rosy - because I've heard it all before. Yes, it's possible that my son may one day live independently - but the odds of that are really very, very, low. It's just as likely that he ends up non-verbal and incontinent (most people with t21 fall somewhere in between). The average IQ for someone with t21 is about 45. Obviously an IQ says nothing about someone's quality of life, but really, you usually need an IQ of about 70 to really function well independently. (Obviously IQ isn't a great predictor of living independently, but there's not much reliable information out there, so it's all I have to go on). The odds are, he will need me for the rest of his life. At some point, I'll get old and won't be there anymore, and he will still need me. This is the dealbreaker.

Then add in the medical issues. None of them are that bad, in isolation. The 50% probability of having heart issues, the 2% who will get childhood leukaemia, 10% chance of autism, the poor immune system that means spending more time in hospital with infections, gut issues, the hearing loss. The 5% chance of not making it through the first year of life. It's just when you add them all up, it's huge. He might get lucky, and not have any significant issues - but once again, the probability of that is low.

@Giantguineapig I'm so sorry to hear this has dragged on for you.
They wouldn't attempt a CVS on me at 14w due to placental position so waited for amnio at 15w and eventually delivered just over 16w. We didn't wait for our full amnio results just first stage and I had already asked them to make a plan for admission and delivery before we got the results as I didn't want that to hold things up. I found it helped me to know what the likely next step was and to have appropriate plans in place.
Let me know if you want more info about our experience of delivery and afterwards. Happy to chat if you want to PM.
Again I'm really sorry, I wouldn't wish this experience and decision on anyone.

Hope you’re doing ok OP, it really is every parents worse nightmare.

I hope the coming weeks are easier for you xx

@Giantguineapig I’m sorry you are going through this but you will get out of the other side. I had my termination on 10 November. Working though it sill, but time does help...

Sorry I’ve meant “working through it still”

I’m so sorry that you’re going through this. It must be such a hard decision & so heartbreaking. I don’t know what I would do in your situation but I just wanted to offer a handhold.
You have to do what is right for you. Sending lots of love xx

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.