Downs risk 1:2. High chance NIPT

[welshmercury]

Looking for a miracle here. I’m 41 and now 14 weeks. NT 4.5, combined 1:2 for Downs and high chance NIPT.

Had CVS Thursday and get results on Tuesday. Hubby wants to TMFR if positive whereas I’m not.

How on earth do you make this decision? It’s my body but I will have to go back to work at 3m old as I earn more and hubby is self employed so that is even more tricky now he has said he doesn’t want take care of special needs baby as he thinks it is cruel to bring a child into the world with Downs.

I’m praying to all the gods that CVS is negative and I can relax but I know I need to to be realistic. I know everything so far is diagnostic and based on my age etc but I have a friend who is 32 weeks pregnant and only 3 months younger than me and got 1:75 of downs on combined test. How do they work it out?

You are right when you say this is your body and your choice. I understand being in a marriage is a 50/50 thing but I had a termination 2 weeks ago and my baby had Edwards, my choice was straightforward as I had no choice, my husband agreed with me but it was MY choice.
It was very very clear from my scan baby had a major problem and of the 3 main Trisomies I was praying for Downs because then I thought at least my baby would be in with a chance. Unfortunately it was Edwards. Tbh. Though if it had been downs I don’t know for sure what my decision would have been because it didn’t happen. Depends totally on the severity and any other issues that would impact quality of life. There are so many things to consider but you’re not there yet and may not have a choice to make hopefully

But I hate hate hate when men or family put pressure on women to terminate. Like you’re not already emotional and full or all these hormones. If you do something you don’t want to do then you’ll regret if forever, you’ll also really resent him and things might never be the same. You really have to want the same things and not do things just to placate someone else. Terminations are difficult, emotionally hard procedures to undertake even when you are fully onboard with it. I couldn’t imagine going through it when you don’t want it.

Sending hugs

No advice but saw your post on the other thread, bumping for you again!

I had 1:5 for my DD (then the harmony test came back negative). We went back and forth on it, but I felt that I wouldn't be able to make up my mind until I had a certain answer. Sorry, that's probably an unhelpful response!
I think all you can do is spend the time educating yourself in a balanced way. Look at the adults living full lives with DS, how much early interventions have improved outcomes for children with DS. There are a lot of inspiring and heart warming stories you will come across. But also make sure you are aware about potential heart and other health complications, and statistics about the range of cognitive abilities people with DS can have and the realities of what potentially having a child with more severe intellectual disabilities would entail.

Honestly I think I was leaning more towards continuing the pregnancy, but I wasn't 100%, and I think things move into focus when you get your answers.

I’m a teacher and have experience of DS children in a mainstream primary school setting. However I recently saw a DS adult with his elderly parents and it made me think. I’m already 41 and do I really want to look after a person in my 80s?

It’s so hard. I’m trying to mentally prepare myself for bad news but I just keep hoping it will all be fine. We already have a 10 year old son, also unplanned 😆

Hubby says we can properly try for a baby again if it is a positive result but what if the same happens? I’m not sure I could do this again. The resentment has already crossed my mind many times.

Last summer we got a kitten as I had turned 40 and felt finally ready to let go of the idea of getting pregnant as hubby always said no for last 10 years. So she is now curled up on my lap and is giving me some comfort.

Morning. It's such an awful situation to be in. We were the same just before Christmas. I had a1 in 13 chance (then nipt came back 'highly unlikely' and we decided not then to go down the diagnostic route). I wanted someone else to make the decision for me (and also hoped that I would miscarry so that I didn't have to make the decision 😢) I too am a teacher and am 39 so am older mum with a 7 year old. I knew that this potentially was my last chance to have another child although we'd not been trying since our son was born, it just felt like the right time. I went backwards and forwards from thinking that I would be able to manage to thinking about what would happen when he was an adult and we were elderly. It's so, so hard and you need to come to this decision together. I've joined the PADS group on Facebook and they are a great source of comfort. The admin on there will answer all questions you have.

I’m so sorry you have this worry op. It might be worth contacting ARC - the antenatal results and choices charity. They have a non judgmental helpline and can listen and provide useful info

www.facebook.com/groups/415274562687672/

For me it's like, you might be a carer for your child into your 40s no matter what. Anything can happen. I had a 1 in 8 chance of Downs and didn't get further tests. I think if you do get the tests it's because it would make a difference to your decision to continue. Because otherwise why take on the risk? So in a way you've already decided.

Best wishes, OP. Whatever happens, don't let your partner decide for you. It's your decision, your body. I'm like the PP, I hate that he's putting pressure on you like that. It's such an intense time anyway.

I mean, into the child's 40s

I agree that it is your body your choice, however it sounds like you would be expecting your DH to be the main carer? That does complicate the issue IMO as it is a lot to ask of someone who would have made a different decision to you. You are right to consider the long term future too.

Good luck OP

Hi everyone. I didn’t make it clear. He is not putting pressure on me. We have just stated our positions. I get the results tomorrow and I have read loads and loads. Something that really hit home is that our 10 year old may end up looking after elderly parents and their sibling when he is aged 50.

@IceKitten yes he would be main carer as I’m a teacher and will have to return to work ASAP as hubby is self employed and currently earning nothing thanks to coronavirus. So my choice would put the burden on him and he has stated he doesn’t want to do it.

@Gettingo

@Balajake

I’m just living in my happy bubble of denial and there is no pressure. Just a difference of opinion but when the baby is inside you it makes a difference.

Thinking of you for tomorrow OP. I know what my decision would be in these circumstances but it's so so hard

Hopefully there will be nothing wrong and no decision to make. Sending positive vibes xx

@welshmercury, did you get your results today?

@Samk79
Yes and confirmed positive for T21. I’m heartbroken. I have read so much over last couple of days and will TMFR.

I don’t want to be knocked out as I want to see our little one. It seems morbid but I just want to give it a cuddle and know that it was loved.

I don’t know if boy or girl. I thought the cvs would tell me. My mum is going to knit me a little yellow pouch so baby is not cold.

Sounds so stupid. It’s my son’s 11th birthday on Thursday and the hospital wanted us to go in but I said no as that is his day and I don’t want it to be a sad day. This means I may have wait until after Easter now.

I made my peace with TMFR before the phone call as I can’t place the burden of care on my current only child for a sibling and elderly parents as I’m 41 and hubby is 43.

Thank you for thinking of me x

So sorry you are going through this. If i were you I would not delay - your son will have many happy birthdays in the future. It's tough but you will get past this. You will most likely find your son an enormous source of comfort in these days.

I think you are making the right decision for you and your family. xx

I am so sorry, but just wanted to say I understand. We have a family member with significant learning disabilities and it is a 24 hour life long job. His dm would have tmfr had she known

@ welshmecury so sorry to hear it wasn't better news, have been thinking of you. Hope everything goes as well as it can for you xx

I am so incredibly sorry for you, OP. I've been through this twice, back to back, years ago and it was dreadfully sad and difficult. Our decisions were based on what would be right for our other children. We had to make a choice with them in mind and it was the hardest, hardest decision we ever had to make.
Please find comfort in the ARC forum- which was a lifeline for me.
Of course, find comfort anywhere you can, including MN. But ARC was a real anchor for me.
www.arc-uk.org/for-parents/arc-forum

May you find peace at the other side of this sad time.

Sorry to hear this news, such a difficult, difficult thing to go through but pleased you've been able to make a decision. It's sounds very much like it's there right one for you xx

I'm so sorry.
We went through this last year. We already have 2 other children.

Before, I would have said I wouldn't have a termination. We didn't have the combined test in my first 2 pregnancies. I hadn't even decided for sure at the 12 week scan, but the high NT and fluid seen was an automatic referral to foetal medicine.

DP said he favoured termination, but also that he felt the decision had to be mine.

I work with adults with learning disabilities. I know from this that a lot of people with DS have a poor quality of life, severe mental health issues etc. Also that carer burden can be extreme. I was particularly worried about my DD1 as she is very sensitive and caring. Was also concerned about the health issues many people with DS face. Ad it turned out our boy had major physical abnormalities so we wouldn't ever have got to the stage of worrying about leukaemia and dementia.

So I had a termination. We spent some hours with him, had him blessed, kissed him, held him.

It will always be painful. But I've also never really doubted that we did the right thing.

I second the ARC helpline. They are wonderful. Also, we put knitting from my mum (sounds like you are on that) in with our baby and some family photos. You may find it comforting to do something similar.

Wishing you all the best.

I am so sorry OP

Sending hugs xx cvs will tell you gender but that usually comes with full report in two weeks. I found out my baby was a little girl. I had the TFMR 2 days after finding out baby had T18 and under general as it was surgical. If you want to see a fully formed baby then you will have to have medical termination with tablets. I did see my baby after surgical but it wasn’t anything I could recognize. Sorry to be so graphic but I had to see afterwards as I would have spent a lifetime imagining it if I didn’t .