Termination for t21 - devastated

[Gurraun]

Hi ladies - reposted from ante natal tests in case this is a better place for this thread.

I am not sure why I'm writing this but I know many of you have been here though right now it feels like I'm the only one in the world.

I'm 39 and 12 weeks with a longed for no3, following a mc in the summer. I talked dh into a 3rd (we already have 2 gorgeous ds who are 7 and 3) and secretly I was hoping for a dd (although another ds would be lovely).

I understand the increased risk that come with age so opted for a nipt but really in a million years I never believed I'd be the person with a high risk result.

I am now booked in for a cvs on Monday but I know in reality that will simply confirm as the clinical results show the test to so accurate.

It is breaking my heart but I know a tmfr will be the right thing for my family- please don't judge me and I understand that children with DS are wonderful but it is a different life and not one I feel we could cope with or that I want my boys to have to cope with, especially given that we are not young parents so in time the responsibility for their sibling would fall to them.

I just feel that I pushed my luck going for a 3rd when I had so much already and now I have my come uppence and feel so stupid that having a girl felt important.My future now is not what I thought it was going to be and right now I am not sure how to bear that. I couldn't put dh (and probably myself) through trying again and now i have to live with the grief and let's face it guilt of not having this baby (because I could but really just to selfish to) and come to terms that my desire for another child is not going to happen.

Sorry for the rambling but I've not been able to sleep and just feel I don't have the strength to face the coming weeks/months/years. I'm very lucky, I have a lot and wonderful support from family and good friends but I feel so alone.

People who have been through this does it get any better- particularly if you don't have another child (lots of threads I have read talk of being healed by a subsequent baby) and did counselling help?

I haven't been through this but did go through all the fears as well (I was 40). I do know from most that I've read is that the nipt is mainly just a risk number. I've read many cases where nipt came back high risk and baby was fine. I know it's so hard not to stress about it, so I won't say that, but try to focus on the positive side of the number.

Thank you. Unfortunately the NIPT is different to the nuchal combined and the results are based on free cell DNA so they are very reliable - only about 0.03% false positive- I wish I had some hope to hold onto but must face reality. Thank you for taking the time to answer.

I just had a thread in antenatal tests about this. Similar to you: two DC aged 7 and 3, I'm 38.
NIPT came back high risk for downs twenty days ago, had a scan the day after and a CVS three days after that. We were pretty clear that it was definitely going to be positive.
I cried lots. Especially pre CVS when the sonograoher was trying to show me how cute the baby was. I had to ask her to be quiet.
Had a private termination nine days after the first test. At 13,5 by my calculations, 13,1 by scan date (baby appeared to grow slowly). I was allowed a GA surgical termination.
Stayed in bed the next two days and have been slowly recovering. I still have big breasts and belly. Clothes and bras still mostly don't fit.
Had a massive sobbing breakdown a few days ago. Am now on holiday and EVERYONE seems to be pregnant. Can't swim or lift or anything but am back in the gym slowly plodding on the machines and promising myself that I will feel and look better soon.
Honestly, I felt much better once I had a confirmed date for termination and better yet when it was done. For one thing you feel physically less exhausted, for another the deed is done and so the what ifs are easier to contemplate I think.
We are still undecided around another child. I think we will probably end up leaving it. I just keep seeing bumps and babies and feeling very wistful.
We are in a good position atm and I couldn't go through this again. I have lined up counselling but not managed to get there yet. My friend thought I should maybe try to process it a bit (she had traumatic MMC of pregnancy #2 after nearly losing DC1 and had counselling after a year or so).
I wish you luck and strength. It is a vile position to be in and I can really relate to your feeling of greed and tempting fate. But it is just bad luck and random egg chromosomes. I was feeling bad baby had a July birthday academically. Obvs now feeling v bad all round.

Thank you for sharing your experience and sorry you had to go through this. It is so awful and I too was just worried about stupid things - due date clashing with other stuff, whether I'd be a bit sad if it wasn't a girl etc. Seems so bloody stupid now 🙁

I had my DS at 40 and had a Harmony test after my 12 week scan, got the result two weeks later. Is that an option OP?

Hi sleepfreezone, thanks for taking the time to reply. Unfortunately the NIPT I had was the Iona test (very similar to Harmony) which is why I'm so resigned to the results

Oh god I'm so sorry, I missed that when I read your OP and thought you were opting for the cvs as a result of a high combined screening result. I think you have to make a decision that's right for you and your family. I had three miscarriages inbetween my successful pregnancies. My third was investigated as we lost her at 11+5 and subsequently found out she had downs.

I do question whether I would have continued with the pregnancy or not but I think I would have chosen to terminate. I think other people's reactions would have finished me off. All the head tilts and faux sympathy, then when the child grew all the gossiping and comments behind behind your back. I didn't feel strong enough. Plus many Down's syndrome babies are lost during pregnancy and I couldn't have coped with a late loss.

I'm so sorry you are in this position

Thank you and sorry for your losses - I am not sure I could bear this if I didn't have my boys - it must be even more unbearable for people with no living children. What a shitty hand of fate

Hi OP, I'm really sorry for what's happening to you and your family.
Please don't think I'm judging as I am most certainly not, but have you fully researched everything? It might not be as bad as you fear and a termination may not be your only option.
for you.

Thank you Mumoftwo. I have done a lot of research but from what I understand we won't be allowed to make a final decision until we have had some counselling and know exactly what we are facing. The nurse told me not to get ahead of myself and see what the CVS brings but it is impossible not too

I agree, I'm a natural worrier! I'm glad you're getting help and support, I can't imagine having to make that decision.

No judging here at all but I just want to add a little support from the other side. I'm 36, a single mum & my 4th child, my son has Down syndrome. I was low risk & realised myself the day after he was born. I knew nothing about DS before he was born & when I first suspected he had DS everything I googled was so negative but actually he doesn't have any medical needs; no heart, bowel, kidney issues. He did everything a bit later; crawling, walking & right now at 2.5 he's just saying a few words but knows over 100 signs. Things are more difficult at times but actually other things are so much easier.
He's amazing & I can't imagine him any other way, he is the child I was meant to have & I promise, hand on heart, I wouldn't remove that extra chromosome if I could. I have become friends with many other parents of children with DS & the spectrum is so wide that I understand your fears; there are children doing even better than my son but also children doing worse but there are also other things that cannot be detected during pregnancy such as autism that can make parenting a much harder job or illnesses that happen after a child is born that can make life tough. My teenage daughter has gone from Angel to hormonal monster.
I send you love with whatever decision you make but please know that DS isn't as scary or as awful as it can initially seem & actually it can be just a very small part of who your child becomes x

Thank you for your kind message Argh. I was so keep for definitive testing and now I just wish I didn't know and had no choice to make ☹️

I hope you're ok OP, thinking of you.

Sounds like they're offering you some counselling and that you've already done some research which is good but there are also some good blogs around which tell things from a "real life" perspective rather than a medical perspective that might help. The main one I have in mind is called "Don't be sorry". It's definitely worth reading from the beginning. Hope you're OK.

Thanks both. I went for the CVS but when they scanned me the baby had died. She could see the thickened nuchal so confirmed (as we knew) she believed the baby had t21. Not sure when the baby died as now classed as a MMC (it was alive and bouncing about on a scan last week). I'm relieved that I don't have to make a decision but obviously gutted. Thanks for all your thoughts- I just want the ERPC done (it is today) because having your body believe it is pregnant whilst your brain knows the baby is dead is not much fun 😢

So sorry Gurran - I hope your procedure goes well and you find the time to grieve

Oh Gurraun you've really been through the mill these past few days.

Please look after yourself, allow yourself time to grieve and to recover from the whole ordeal

I'm so sorry
Wishing you strength for the next few weeks xx

So sorry

What a tough few weeks you have had, I'm so sorry.

So sorry Gurraun.

Thank you all - definitely a week I wouldn't wish on my worst enemy ☹️

So sorry to hear your news. Look after yourself