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High risk screen positive of 1:25 for downs

(117 Posts)
kh0609 Tue 05-Jul-11 15:03:10

I found out last week after having the combined test done that i have a 1 in 25 chance of having a baby with downs. Its my 3rd child i'm 32 and my dating scan showed the fluid behind the babies neck was normal (1.7).

I have to wait until next week when im 16 weeks before i can have an anmio. I'm hating the wait and feeling worse each day and don't know how i will cope until i know the outcome. I would like to think i will continue with the pregnancy but i dont know how i'll feel if i get told my baby has downs.

Has anybody else been through this, im finding it very destressing and wish i'd never had the test done.

any advice would be gratefully appreciated xx

Tanif Tue 05-Jul-11 15:07:24

If it makes you feel any better a friend of mine had the amnio and discovered everything was absolutely fine and has the most adorable chubby-cheeked one year old son. Think very carefully about whether or not you would terminate if the baby were downs. At the end of the day the amnio is not without it's risks and if you would keep the baby either way, why put them in harms way when they could be perfectly healthy?

NorthLondonDoulas Tue 05-Jul-11 15:08:33

Oh hun.... im afraid i have not been in your situation but would just like to say although your results have come back 1 in 25 please remember that it does not mean that you will be that 1. Not alot is going to stop your mind from working over time, but take time to have a think and discuss things with your hubby and other people close to you. Keep your self busy and there are always other mums on here to talk to. Stay strong and i wish you all the luck in the world!x

LillianGish Tue 05-Jul-11 15:12:42

First of all the results of this test don't mean there is anything wrong with your baby - in fact though the odds are shorter than you'd like they are still very much stacked in your favour. If you trawl the archive you'll find lots of old threads on this very subject. I was in the same position with my first pregnancy, in fact my odds were even shorter, and I totally understand your anxiety - I remember it felt like a body blow and for me once the seeds of doubt were sown I had to find out. I had an amnio and the baby was fine. Two years later and pregnant with ds I was positively hoping for an amnio so I could relax for the rest of my pregnancy. Once again the odds were short, once again I had an amnio and once again the baby was fine. To sum up I would say your baby is almost certainly fine, but if you want to be sure I wouldn't hesitate to have an amnio. Good luck whatever you decide and try not to worry - though as this is dc3 you are no doubt more than aware that being a mum is just one worry after another!!(and lots of lovely bits in between).

babyonbord Tue 05-Jul-11 15:15:36

I didn't have any tests done for downs, i refused them on the basis that it would make no difference to me if my baby had downs or not. At the end of the day there are hundreds or thousands of genetic conditions a child can be born with that sceening for one is pointless. I was born with ecotdermal dysplasia in a million to one chances, any children i now have have a 1 in 2 chance of having the disorder, (my ds has it, i won't find out with this preg until he is born). My point being you get the baby you get does it really matter if they have downs or not? would you love them any less? As a parent you give a child a life, what they make of that life is down to them if you asked a person with downs syndrome whether they would have rather been terminated i think their answer would be no. You're having a baby, it's the most amazing, wonderful thing don't let it be ruined by some pointless test, you might think that a baby with downs or any other problem is less than perfect, but they wouldn't be because they are your baby and they will be prefect exactly as they are.

kh0609 Tue 05-Jul-11 15:20:59

I'm definitely having the amnio, i couldn't carry on for the next 25 weeks not knowing, its the not knowing part that i'm finding hard to cope with, im trying to stay positive. does anybody know if when they do the amnio and you are scanned do they look for signs on the scan for downs, for example the nasal bone??

thats for your kind messages

LoveBeingAbleToNamechange Tue 05-Jul-11 15:25:52

I completely understand I really didn't consider the impact of the results being anything except positive. I had a 1:15 from my blood test alone. I had the amnio and ds is clear of all the things they test for. I was the same I couldn't not find out.

It does occupy evey thought and I got the call went in the next morning and paid for the special test that gave me result the following afternoon. That felt like lifetime.

spookshowangel Tue 05-Jul-11 15:28:32

my bf had a 1 in 10 chance for his dd she is perfectly healthy.

LoveBeingAbleToNamechange Tue 05-Jul-11 15:31:38

They didn't on mine, my scans were too late for the nucal testing. Consult did a very quick scan but was more looking for his access point I think.

It's not pleasant just try to remain calm and you will need lots of rest for a few days after. I couldn't look and accidently let my eyes wonder to the screen when was doing it. Whilst I know he was no where near the baby I wish I hadn't as it did freak me out abit.

LillianGish Tue 05-Jul-11 15:32:19

If you have an amnio you will get a definitive answer as they test the chromosomes of the baby. I think you can have other scans looking at the nuchal fold etc, but these are not 100 per cent accurate. As I said before, having had two amnios myself I really wouldn't worry too much about it. You will hear lots of scare stories about the risk of miscarriage and hear various statistics bandied around, but I would ask the consultant carrying out the test for his own statistics - at the hospital where I had mine he said they'd never had a miscarriage as a result of an amnio in the 20 years he's been there. I just wanted to add that they do screen for other abnormalities while they are at it, though you are at no higher risk of any of those, it is very reassuring to get a clean bill of health if you are the sort of person, like me, who would be really worried otherwise.

LoveBeingAbleToNamechange Tue 05-Jul-11 15:32:45

Btw remember 1:25 risk of fs also means 24:25 of not having ds.

LoveBeingAbleToNamechange Tue 05-Jul-11 15:33:55

Ditto everything lill said

kh0609 Tue 05-Jul-11 15:35:04

thank you 'lovebeingabletonamechange' its good to hear from someone who has been through it. unless it happens to you, you cant begin to understand how it feels. its hard to look on the positive after having 2 low risk pregnancies. This is the first time i have had the combined test (it wasn't available previously), so it is very worrying.

thanks again for the kind wishes everybody xx

LoveBeingAbleToNamechange Tue 05-Jul-11 16:00:13

I would say don't expect the worry and need to talk to disappear after your result, it's a big thing to go throuh.

Mmmmcheese Tue 05-Jul-11 16:41:22

1:25 means a 96% chance of not having downs.

Northernlurker Tue 05-Jul-11 16:44:48

There is a really good charity which has a helpline to help mums and dads in your situation Link here

FannyLogan Tue 05-Jul-11 18:29:08

I had a 1 in 3 chance of downs shock

I also wouldn't have terminated, and had an amnio at 16 weeks that was all clear! It can happen even with odds as crappy as mine!

Try the antenatal tests and choices board - loads of lovely ladies over there who have been through this and are a great source of knowledge and support.

kh0609 Tue 05-Jul-11 18:35:11

where do i find the antenatal tests and choices board at??? im new on here!!

RingEir Tue 05-Jul-11 18:51:54

I know just how you feel. I was given odds 1:50 - based on the bloods, the nuchal fold was ok. I was going to do the amnio, like you I thought I couldn't live with not knowing, but at the last minute I chickened out. I just got a bad feeling and went with my instinct. My baby is due in 3 weeks and I still don't know whether he will have DS or not, but I have had several scans since and everything is looking good. When we decided not to do the amnio (at around 15 weeks I think) they did a detailed scan to check for nasal bone, femur length and other soft markers. But this is in Spain, I don't know what the procedure is in the UK. It is very personal, but one of the reasons I didn't go for the amnio was because I wasn't prepared to hear 'bad news' and I knew I would not terminate either way. I have now pretty much come to terms with the fact that we could have a DS child, although it is pretty unlikely.

At the moment I know that the wait is torture, I think those weeks were the worst in my life, but it will get better whatever you decide to do. Take care and try to distract yourself in the meantime. This might be counter-productive for some people, but I found it helpful to get as much information about the procedure as possible.

The antenatal tests and choices thread is listed in 'all topics'. You will get a lot of useful info and support there.

RingEir Tue 05-Jul-11 18:54:01

Here you go.

kh0609 Tue 05-Jul-11 19:03:10

thanks and good luck with the rest of your pregnancy xx

FirstTimerMay Wed 06-Jul-11 12:32:22


Firstly I'm so sorry you're going through this, unfortunately I completely understand your worry.

I had a MC in September (hence site name so pls ignore) and that was a dreadful time but then when I fell pregnant again and got to the 12wk scan without any problems it didn't even occur to us that something would come up from the scan, especially as I'm 27, we thought we'd had our bad luck!!! We had our scan saw the heartbeat etc so was over the moon and then they hit us with the info that the neck measurements alone took our chances of baby having downs from 1-842 (just based on my age) to 1-32!!! My bloods then reduced the whole stat to a 1-9 chance.
We had a CVS test at St Georges in London the next day, that short wait seemed a lifetime so I really feel for you!! BUT I can report that there is nothing as all wrong with baby w that can be detected. They can't explain why the results were as they were, especially why the bloods then made it worse, but I've been back to St Georges for a 16wk scan, 20wk scan and 30wk scan and they've included 2 heart scans and they are as sure as they can be with any pregnancy that baby w is fine and on track to meet us on 29th July (s/he will NOT be late because I say so smile
I found people telling me that 'don't worry it'll be fine' was soooo annoying and unhelpful, they meant well and afterall what else can they say, but it will only be the results that can stop you worrying. I can however say that as awful and dreadful and confusing as it all feels now, it really doesn't mean the news will be bad, the scan and blood tests really are just an indication and in no way does it mean you your baby will definitely have something wrong.

My fingers and toes are crossed for you and I hope the wait passes as quickly as possible for you.

Take care x

babyonbord Wed 06-Jul-11 13:29:50

Message deleted by Mumsnet.

kh0609 Wed 06-Jul-11 13:32:51

Thank you so much its a comfort to hear of people going through the same thing and getting good news. I am not having my amnio until next wednesday which is 2 weeks since i found out so the wait is endless. I have looked into having it done private but i live in cumbria which has limited access to such services, next wednesday is the earliest i can have it done.

I hope you soon have a beautiful baby, my second baby was born in july (its her birthday next week) so i hope you are coping ok with the heat!!!! i really struggled!!!

I'll post on here how i get on, i hope in the future i can also be a support to other people who have had to go through this awful situation because until it happens to you, you cannot understand what it feels like.

Thanks again

kh0609 Wed 06-Jul-11 13:52:18

To 'babyonboard', firstly if you cared to read previous comments i have no intention of aborting my child, i have always been and still am very much anti-abortion. I am struggling with the current nightmare i am going through of not knowing if my baby has downs or not, as a natural worrier i could not carry on for the remainder of my pregnancy feeling the way i do, i have 2 other children to think about and me and my husband feel it is better for us as a family to prepare over the next 6 months if our baby does have downs.

In future i would appreciate if you kept your narrow minded comments to yourself, what right do you have to tell me i dont deserve this baby, i am a good loving mother to my 2 children and will be to my next regardless of its disabilities.

I asked if anybody else had gone through this situation and have received many comments from lovely people who can offer support from their own experiences.

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