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1/60 chance of Downs. Very anxious here!

(40 Posts)
blueberrymuffin88 Mon 29-Jan-18 11:45:33

I just got a call from the hospital and I have a 1/60 chance of Downs. Has anyone else had this result and if so what did you do/what happened? I guess I just need a bit of reassurance, I'm a highly anxious person and I was dreading this happening. I'm 30 and this is our first baby, we are so so happy and excited but every little thing is terrifying me and now this ... We are going to see midwife this afternoon at 4 to discuss results but I'm freaking out. 😢

Taranta Mon 29-Jan-18 13:22:42

I had a 1/14 risk of Downs with my second DS but he was perfect, no abnormalities at birth. It felt like a huge risk but actually it equated to something like 8 percent risk, or 92% of there being no abnormality present.
So looking at it the other way round you've have 98% chance of all being well, which I'm sure it will be 💐 x

blueberrymuffin88 Mon 29-Jan-18 13:38:32

Hi Taranata,
Thank you so much for your reply, it means a lot, I've got no one to talk to (DP at work) so going a bit crazy! That is very reassuring to hear and I'm so glad your baby was fine. Just can't stop shaking with worry, I always jump to the worst possible scenario in my head! I just don't know if I want to risk the further tests when there's a chance of miscarriage (however small)

Lindah1 Mon 29-Jan-18 13:45:10

Hi sorry to hear you're going through this. With our daughter the blood test result combined with the scan measurements came back with a 1/5 chance of ds. They only gave me a vague reason for coming back in on the phone so I went alone not expecting to hear that. I decided on a cvs which was done the following day, and the results were in by late the next day. She does not have ds.

BridgetJonesDaiquiri Mon 29-Jan-18 13:49:40

Have a look at the harmony prenatal test - it’s a simple blood test for Down’s Syndrome, Edwards and Patau Syndrome - no risk of miscarriage and 99% accuracy. Tests the free fetal DNA in your blood rather than the baby’s amniotic fluid as is the case with an amniocentesis. Not yet available on the NHS yet but around £500 at private clinic. Worth it if you can afford it x

Lindah1 Mon 29-Jan-18 13:55:11

Hi Bridget, if that's the same test they mentioned to us, it still doesn't give a yes/no answer it's still a 1 in whatever result. It also takes a while to come back and we couldn't stand the waiting x

blueberrymuffin88 Mon 29-Jan-18 14:35:00

Lindah1 wow those were some fast results and I'm so pleased everything turned out well for you despite worse odds. I think I'm just going to have to risk the tests. Not knowing for the rest of my pregnancy is too much stress for an already easy-to-stress person like me. Thanks for all your replies, they mean a lot. X

ReggaetonLente Mon 29-Jan-18 14:44:21

Just wanted to respond as I am an extremely anxious person too and I can only imagine how you must be feeling. We have our 12 week scan on Wednesday and this is something I've worried about a lot.

But. 1 in 60 is pretty bloody good odds of things being fine. It's about 1.7% chance of things not. If you were a betting woman, you wouldn't put any money on that would you? That's what I keep telling myself when I see statistics and percentages etc.

I'm very sorry you have all this worry. I really really hope that things work out for you and you find some peace soon.

blueberrymuffin88 Mon 29-Jan-18 15:25:23

Hi Reggaetonlente,

Thanks so much for your words of reassurance, you are right they are good odds. What you say makes complete sense logically but as I'm sure you know, being a very anxious person, all the logic in the world can't override the nagging worry and doubts. Still, I'm feeling marginally better after reading all these kind posts, I'm so grateful of the support!

I wish you all the luck in the world for your scan on Wednesday. It really is magical seeing your little one wriggling away in there. Wishing you a healthy and happy pregnancy!
We're going into hospital in 30mins to talk over the results/decide what to do. X

Cantchooseaname Mon 29-Jan-18 15:33:02

Hope the midwife can reassure you, and you get some peace of mind. You could think about it this way- if you had 60 babies, 59 of them wouldn’t have downs.
Maybe some good music/ crap tv to distract you?
Do be honest about your anxiety- they can help!

Bellamuerte Mon 29-Jan-18 15:34:03

I'd also recommend the Harmony test. It's 99% accurate unlike the NHS combined test which is only about 84% accurate. Also it's non-invasive and carries zero risk so it makes sense to have it before considering amniocentesis (which is risky and invasive).

BridgetJonesDaiquiri Mon 29-Jan-18 15:46:33

@Lindah1 you’re right harmony/NIPT does come back with a 1 in X number but it is basically high or low risk (low risk being something like 1:10,000 given). As it is far more accurate that the NHS combined testing currently, a high risk result from harmony would generally mean the baby does have a chromosomal abnormality, which could then be confirmed via amnio/CVS. The issue with NIPT and why it’s only 99% not 100% accurate for Down’s syndrome is that there have been a few cases of false positives - meaning mum has been given a high risk result when Baby doesn’t have Down’s syndrome - and then they’ve still had to go on to have the CVS.

Apparently the NHS will offer NIPT from 2018 — you can read more information from NCT on it vs CVS.

For total peace of mind though it may be best to go amnio/cvs route. Whatever the OP decides, wishing her all the very best x

NinaMarieP Mon 29-Jan-18 16:09:09

Mine was 1 in 34 and I panicked too. My almost 6 month old son is asleep on me now and he doesn't have Down syndrome.

Best way to think of it is: you have sixty balls in a ball pit. One is black and the other fifty nine are white. Blindfolded, you pick up one. Odds are massively in favour that you will have picked a white one, yes? If the black one was a prize you wouldn't be that hopeful to win it. If it was a diagnosis of Down syndrome you could realistically be very hopeful to be OK.

I had a CVS just so we could be prepared. I suppose what you do depends on whether or not it makes a difference - if termination is an option especially. If not, would you rather know now or find out at the birth?

blueberrymuffin88 Mon 29-Jan-18 17:07:51

Ok so just been for a discussion with midwife. She gave me the break down of my 12week scan tests. For Nuchal Translucency I was low risk at 2.4 but my HGC levels in bloods were very high at 119 (3.91 MoM). So I think they are mostly basing my 1:60 chance on my very high levels of baby hormone. Makes sense really as I've had terrible morning sickness from week 4. My mum had the same for 5 months so now thinking high hgc levels run in the family. Not sure if this really changes my decision to do the test or not. I'm too late for CVS now so it will have to be amniocentesis at 15 weeks or go private and get the NIPT. This is horrible. Thank you to the person who mentioned to mention my anxiety to midwife. I've been referred to clinical psychology so hopefully I should get some help throughout my pregnancy.
You've all been amazing! I like balls in the pit analogy! X

Cantchooseaname Mon 29-Jan-18 19:55:17

I’m so glad they have offered you help. I was referred, had some sessions, plus checked in once baby was born. Having a little one is a lifetime of worry, get some strategies/ help on board now.
Good luck

user1512465920 Thu 01-Feb-18 12:06:12

I got a call from the hospital this morning to say (following combined screening) the baby has a 1 in 82 chance of DS. Low chance of the other 2 syndromes, which is a relief. NT was normal (1.8) and ultrasound looked normal, but turns out my HcG is high (didn’t get exact result over phone), Papp-A is normal. Decided to go private for Harmony test as not available on NHS in my hospital till Oct/Nov. Trying to feel positive as odds are quite good, but uncertainty is horrible! I’m sure we’d love a baby with DS just as much as one without DS (my partner is Deaf and we have lots of disabled friends), but it’s just such a worry, not knowing if your baby will have serious health problems or learning difficulties sad Sharing here as don’t want to worry my family until we know for sure.

blueberrymuffin88 Thu 01-Feb-18 15:52:38

Hi User1512465920

Sorry about your news, it does come as quite a shock doesn't it. We also opted for the private NIPT/Harmony test as it's not available on the NHS near us yet. Got it on Tuesday and should hear back in 7-10 days. My B-hCG was very high apparently for 13.3 weeks at 119 (3.91 MoM) although according to most websites that seems to be within the 'normal' range 🤷‍♀️. My PAPP-A was on the low side at 2986 (0.53 MoM) and the NT was 2.4 so in the normal range. How old are you if you don't mind me asking? I'm literally counting down the days now the wait is unbearable!! We just want to know either way! Wishing you all the best and let me know how you get on xx

user1512465920 Thu 01-Feb-18 18:44:53

I’m 40. I think my age is a factor in the higher risk. Got Harmony test planned for tomorrow morning. Then 3-5 working days to get results. It’s going to be a long week!

Sparklesdontshine Sat 03-Feb-18 13:34:20

I'm also waiting for private Iona results to come back (same as harmony), my chance is 1 in 6.

Ruth1988 Sat 03-Feb-18 13:49:04

Blueberrymuffin1988 I didn't want to read a run as this is something I can totally understand!

I was given a 1/101 chance due to higher HCG and lower papp-a. I opted for the harmony test and it came back as less than 1/10000 risk! I haven't had the little lady yet but it really has put my mind at rest!

My original post will be on here somewhere if you would like to look I posted all my test results from the 12week screening.

Will be thinking of you, stay strong, you will get through this stage and feelings no matter what xx
And please don't push yourself like I did! I wish I had asked for help sooner from professionals about my high state of anxiety/ low feelings xx

blueberrymuffin88 Mon 05-Feb-18 15:17:53

Hello @Ruth1988
Thank you so much for your message! It's great to hear about other's positive experiences regarding high risk results and we had quite similar results on our blood so I'm very hopeful that all is well. The waiting for is killing me, it just feels like everything is on hold! I'm expecting results back tomorrow at the earliest (don't think I can wait any longer).
Im so glad I'm getting help Re my anxiety - this whole experience has been very daunting so far. How far along are you now? I hope the rest of your pregnancy goes smoothly. 😊x

bruffin Mon 05-Feb-18 15:20:52

I had a result of 1/60 with DD 20 , i had an amnio which came back clear. She was fine.

EggysMom Mon 05-Feb-18 15:30:51

I was given a 1/5 chance with our son (I was 40). We took a very relaxed view, we wanted our baby and were prepared for him to have Downs but there was an 80% chance he wouldn't.

He doesn't have Downs. He was very premature, and is deaf and autistic with severe learning difficulties. None of that could have been detected through pre-natal tests.

TheDuckSaysMoo Mon 05-Feb-18 15:40:27

I was a 1 in 38 chance with DC1 and very anxious. Harmony test wasn't available in those days so the only option was an invasive test. DH and I decided that no matter what the result was we would continue the pregnancy. Therefore we didn't risk the tests. Making this decision helped reduce the anxiety - maybe by 50% - and made it bearable. One of the first questions I asked after the birth was if the baby had DS.

TheDuckSaysMoo Mon 05-Feb-18 15:41:33

Oh, and DC doesn't have DS.

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