Downs risk high, Papp A low - broken mum

[alotoftutus]

Hi,
Yesterday I got my results back and learnt baby has a high risk of Down's syndrome- 1:6 so a very high risk really.

I had the NIPT today but am completely broken. I don't know how to get through the next 2 weeks waiting for the results.
I know the test is pretty accurate but wondering if I should have gone for the cvs to get a definitive answer.

Results break down

BHCG 25.20 IU/L 0.80 (what does that even mean?) what should it be?

NT measurement 2.3 mm 1.87

PAPP-A 620 mlU/L 0.4 apparently that's low?

Midwife wanted to prescribe me asprin for low Papp A - doctor wouldn't sign it off and said I was low but not low low! Midwife was clearly irritated by this and on the way out told me to buy some if I'm able to. Is there a particular type I should take or dose? Does aspirin even come like that? I've never actually taken it.

I'm 38 which obviously has increased my risk but 1:6 seems like a dead cert. can it be anything other than downs with those results? I need to be mentally prepared.

Don't really know what I'm asking, my heads all over the place sorry.

How do I get through the next 2 weeks waiting for the results 😭

I’m so sorry you’re having to wait even longer for your results @alotoftutus - must have been so frustrating to not find out yesterday.

I feel like my heart is literally broken. It is the most awful thing to go through but we have to keep telling ourselves we have gone through this so our baby never had to suffer. The midwife said she could see our baby was poorly by looking at him which reassured us we’d made the right decision.

How many weeks are you? I was 17+3 when I had the TFMR due to delays having the amnio.

The midwives at the hospital were amazing and so kind which really helped. The bereavement midwife visited me at home and again was so supportive and has referred me for counselling. My husband has been an amazing support through all of this too.

Take care x

Good luck today @alotoftutus thinking of you xx

Mine was 1 in 3 with a massive NT of 4.6mm. Despite the pessimism of the doctors who were convinced a 1 in 3 meant definite DS an amino (before NIPT) showed he did not have DS.

@HazyDays81 Thank You.
I'm 14+3 now - and still no results!!! 2 weeks tomorrow. If I don't find out tomorrow I am going to move myself into the dam hospital and not move until someone tells me what's going on.
I'm pretty certain my outcome will be the same as yours - it's just a gut feeling. I felt it even before the initial scan, and when I was being scanned I remember wondering why s/he wasn't moving their legs like other babies I've had. I couldn't put my finger on it but something was definitely different about my scan, even the photo was different. I'm feeling relatively calm today. I've almost accepted it so perhaps it's good that I've been made to wait an eternity.
Down's syndrome is however following me around the internet. I know it's just algorithms but every time I scroll Instagram a new family pop up with a child with DS, even a minute ago a Facebook ad with a new children's book about a fairy with DS came up as an ad. I actually felt really angry and chucked my phone - ok writing that maybe I'm not feeling as calm as I thought lol. I'm probably just noticing it more but it's everywhere and it's driving me crazy - I know that makes me sound like a completely awful person

How are you holding up anyway? I'm glad you have support, it's good to hear that we don't have to go through something so traumatic and are just left to it afterwards. I'm so sorry you are in pain - it's just so completely cruel ❤️

@ChandlersDad Thanks for sharing, I'm glad you had a positive outcome. Are you still pregnant or have you had your little one?

@alotoftutus so sorry you’re still waiting. I really feel for you. Are you in the UK? Fingers crossed you’ll find out soon.

Try not to give up hope though, it’s good to prepare yourself but everything may still be fine for you!

I’m ok(ish), the first few days were awful but time does help. I feel sad that this was probably my last chance for another baby. I’m now 41 and DH doesn’t want to try again and I’m not sure I could go through this again as much as I want another baby. For now I’m trying to look after myself and my children are helping get me to through it.

Hi ladies,
So this morning a letter popped through the door with my results. They have come back as low risk! I am In complete shock to be honest as I wasn't expecting that outcome at all - or a letter!!
I don't think it's sunk in yet. I'm not jumping up and down like I thought I would be, it just doesn't feel real.

Thank you so much for being there for me. Having you all at the end of my phone completely understanding of the pain, and also completely un judgemental has saved me from going totally insane. It's definitely been the hardest couple of weeks of my life but you have all made it slightly more bearable. Xxxx

I’m so pleased for you! I hope you are able to relax now and enjoy your pregnancy. It’s such a shame you were left waiting so long for the results with all the stress and worry, it must be such a relief x

@HazyDays81 Thank you - that means a lot especially from someone going through what you are ❤️

I decided regardless of the outcome of this pregnancy I couldn't mentally go through this again either (I'm 38) so completely understand what you mean. I have decided to look into getting my tubes tied. Even though my outcome has been what it is I still feel emotionally battered

He is 11 now. And lovely 🥰

Pleased to hear it x

Hi I’ve been told today 1:2 can you give me hope x

@CharlotteFlorence gosh this post brought back so many emotions. I'm so sorry you are going through this - I won't lie the next few weeks of your life will be hell. Have you been offered the NIPT? My "baby " is currently sitting on my lap refusing to sleep - he will be 2 in March and completely healthy. I had the NIPT which came back as low risk, but I continued to worry until he was born to be honest. I hope you have support around you xxx

I’ve cried for 6 hrs straight I’m in so much physical pain , thank you for your reply
what was your probability at the combined result please ? I’m just praying
it was so active on the scan and has the longest legs and it’s neck measurement was just 1.1
im just in complete shock xxx
ive asked for a nipt test and hopefully will get this on Monday xxx

I’ve cried for 6 hrs straight I’m in so much physical pain , thank you for your reply
what was your probability at the combined result please ? I’m just praying
it was so active on the scan and has the longest legs and it’s neck measurement was just 1.1
im just in complete shock xxx
ive asked for a nipt test and hopefully will get this on Monday xxx

I was 1:6. I wish there was something I could say to help, I remember that pain so well, followed by the guilt - it's horrible. Hopefully your results come back really quickly. Mine took a full 2 weeks and they wrote to me (even though they said they would call). Don't feel like you have to make any choices yet. Just take one step at a time would be my advice. I made myself ill thinking of all the options before I even had the results. Have the hospital given you any info and websites that you can access support. I will see if I can remember where I was directed - they were amazing. Just to have a non judgmental ear on the phone really helped. I also looked into life with a baby with Down syndrome which also brought comfort even though I didn't know what option I would have taken should my results have been different.

Thankyou so so much
it eases the pain a little knowing im
not alone and others understand who have walked this path
im just struggling to find strength for each moment
it’s the most painful feeling the unknowing and clutching to literally anything I can.
any supper groups would be greatly appreciated
Thankyou again for taking time to reply
xx

So painful. I went from crying constantly, not sleeping at all, having panic attacks to then becoming completely disconnected from my pregnancy and feeling numb. At the time I spoke to others on here who said they went through that too, so if it happens to you it's normal - your feelings are valid - all of them! Be kind to yourself lovely

Afternoon

i’ve had the news that my little one is one in seven of having down syndrome when I had my other little girl it was one in 153 and I can’t stop thinking about 1 n 7 is so low my partner is trying to make me feel better by saying it’s only 14% but you know when you can’t just get it out of your head and I’m so worried about it. I should have my results back by Wednesday but I’ve just spent the day one having sickness bug and just constantly thinking about the results. I think it makes it worse when you have a little one to think about.