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Original poster

1:34 chance of Downs

55 replies

Sahkoora · 17/04/2014 09:02

Had 12 (though was 13+1) week scan on Monday and got an NT of 3.6. They rushed bloods through and yesterday I was told I have a 1:34 chance of Downs. I'm 36.

Hospital trying to get me a quick appointment for a CVS, but thanks to the bank holiday, it's looking as though I will have to wait until I'm 15 weeks for an amnio as I will have to travel to London.

I need to find out fast, as DH and I have decided we would terminate if the test comes back positive. DS1 has ASD and we have had hideous struggles getting him anything. As parents we've had no support, and the though of caring for a severely disabled child for the rest of our lives is too much.

Just wondering if anyone has had similar odds and also what the tests are like? I hear varying reports about it hurting etc.

OP posts:
Allthegoodusernamesaretaken · 17/04/2014 11:22

Hi Sahkoora,

Sorry to hear you're going through this. I also had a high nuchal measurement and my combined result was 1:20. My DH and I were in shock but agreed we would also terminate if chromosomal abnormalities were confirmed. I felt guilty but like you, I don't think I could cope in this situation. In any case, nobody has a right to judge.

I had CVS as I would have had to wait until later in the pregnancy for amnio and we wanted to know sooner rather than later.
The procedure was over very quickly and was uncomfortable rather than painful, although my abdomen was quite painful soon afterwards and I found it difficult to walk. That wore off after about 20 minutes and for the rest of the day I just felt a bit delicate but it was not too bad. For me, the pain and discomfort was a price I was definitely willing to pay to get a definitive answer. Luckily for us, our results came back clear. I think the waiting was the hardest part.

Although the miscarriage rates for CVS are supposed to be 1 or 2 in every 100, the consultant told me this is more like 1 in every 500.

Please let me know if you have any other questions. I hope it all works out ok for you.

LillianGish · 17/04/2014 11:31

I had an amino with both mine - I don't remember my precise odds, but combined with my age I was advised to have one. Worked myself up into a right state before the first one and it was such an anti climax I actually hoped I'd have to have one second time around. Try not to worry about it - the odds don't mean much really - your baby is still more likely to be ok than not. Like you I absolutely wanted to know and the peace of mind afterwards was great. Good luck.

Teaandtoast1 · 17/04/2014 11:38

I have 1:5 odds but have gone for the private blood test as I don't want to risk the amino. It's £295 where I am so I've gone for that. The waiting is hell though I won't lie.

Hope you are ok x

minipie · 17/04/2014 12:20

I had a 1:42 chance of Edwards and Patau and a 1:102 chance of Downs. I had a CVS which thankfully came back negative for all 3.

The CVS itself was ok - it did hurt a bit, when I was stabbed with the needle, but not otherwise and not afterwards. They show you the heartbeat on the screen after the CVS/amnio - if the heartbeat is still there then the chances of MC are much lower.

It's definitely worth travelling to a big city hospital for a CVS or amnio as they do them so much more often and the MC rates are much lower than the quoted 1 in 100.

If you can go private, the Fetal Medicine Centre in London has a great reputation.

The Harmony or NIFTY blood tests are another option available now - I am not sure if these are available on the NHS, I think a few hospitals offer them if you have a high risk result but others don't. Could you pay for this? They are 98% accurate I think.

SoonToBeSix · 17/04/2014 12:29

I have a child with autism I understand the lack of support it is very very hard. I wouldn't class Down Syndrome as a severe disability though have you spent any time with children who have Down syndrome?

PrincessBabyCat · 17/04/2014 13:01

Obviously modern medicine has come further from when I was born, but when my mom was pregnant the tests came back positive for downs and I was born perfectly normal.

Don't feel guilty. My husband and I already agreed before any tests that if there were any genetic defects or serious health issues with the baby we'd terminate. Not everyone has the ability to care for a disabled person.

Original poster
Sahkoora · 17/04/2014 14:24

Thanks everyone. Think I have an appointment at the Norfolk and Norwich hospital for a CVS on Tues. Just waiting to hear back with a time.

Anyone had their CVS there?

OP posts:
MrsPixieMoo · 17/04/2014 14:26

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Poshsausage · 17/04/2014 14:33

I understand your confusion . We had the same result recently . But. , prior to that anomalies were picked up on the scan , he was small and had hydrops .so we were referred to uch who were brilliant and had a detailed scan . Picked up heart problems too . Consultant advised and counselled us and as we had another twin in there to consider , as well as two other children one with serous health problems , we terminated there . They took samples cvs . When I got home I got my nich blood results 1:30 for downs . But it turned out the cvs picked up a chromosomal abnormality as suspected and it had an 18q deletion .we have done the right thing . Other twin is doing just fine and I'm 22 weeks today . Had genetic testing also and all is ok .
Was anything picked up in scan ?
Hospital will advise you and have a good look at baby . Procedure was fine but I was sore and went to bed for the rest of the week . It's been a roller coaster.
Hope all turns out ok for you, still high odds that all is well .but good to discuss these things too .

NightCircus · 17/04/2014 14:33

What a horrible thing to say mrs Pixie

Allthegoodusernamesaretaken · 17/04/2014 14:38

Really unhelpful comment, MrsPixieMoo. The OP has posted for support and reassurance, not criticism.

Unless you have been in this position yourself, you cannot possibly understand how she might feel right now.

For me, this was not about wanting a 'perfect' baby. It's about being able to give my child the best life possible. I am a practical person and I know my own limits. In my heart of hearts I know I would not have been able to cope.

Fortunately, my CVS results were clear but that didn't mean I didn't cry solidly for 3 weeks at the potential prospect of terminating my very much wanted baby.

MrsPixieMoo · 17/04/2014 14:38

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Wishfulmakeupping · 17/04/2014 14:41

Reported that comment pixie- OP wants support not to start an ethical debate

madwomanbackintheattic · 17/04/2014 14:42

sahkoora - fingers crossed everything goes well for Tuesday.

As a matter of interest, it is far far easier to get support for children born with disabilities such as Downs/ CP than it is for social communication disorders etc that show up later and can be misinterpreted/ are up for some sort of debate during the diagnostic process.

We were discharged from hospital after birth with a full complement of therapists and community support, and received hr dla from 6 mos. there is much less fighting for support in this instance.

I am not trying to change your mind at all - we all rightly make our own decisions and you have made yours, which needs to be supported, but thought I would post in case anyone is going through similar in the future. It's such a hard decision, and especially for families already bringing up a child with sn, there are all sorts of other factors at play. Good luck xx

MrsPixieMoo · 17/04/2014 14:42

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picnicbasketcase · 17/04/2014 14:46

I imagine it's because the OP hadn't said anywhere that she thinks 'people with Downs shouldn't be alive', but that her choice for her family might be to terminate. Try to have some compassion for someone in a horribly difficult situation.

MrsPixieMoo · 17/04/2014 14:50

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SecretWitch · 17/04/2014 14:55

MrsPixieMoo, how dare you use this thread to grind your axe! If you feel strongly start your own thread, but please leave this poor pregnant woman alone. To try to shame her is beyond disgusting.

Poshsausage · 17/04/2014 14:57

This reply has been deleted

Message withdrawn at poster's request.

Poshsausage · 17/04/2014 14:58

Phew . Please remove my one above too as it refers . Don't want any distractions on this thread

SecretWitch · 17/04/2014 14:59

OP, I'm sending good wishes for the most positive results. I wish I could be of more assistance but I'm out of the pregnancy business. Xx

Allthegoodusernamesaretaken · 17/04/2014 15:34

Just wanted to add - 1:34 means there's a 97% chance that your baby is fine. Those are pretty good odds.
Thinking of you.

WipsGlitter · 17/04/2014 15:40

Hi, I have a child with DS, as someone above says its not the end of the world, but I can see how with your other child's ASD its a daunting prospect. One of the things I've always though about my child having DS was that it was 'easier' than and ASD diagnosis; we knew from birth he had it so no 'do you think...', there is a well trodden path of care so no fighting to access services or a diagnosis, it sounds terrible but my expectations of him are realistic - I want him to be happy and fulfilled as a child and adult so no stress about trying to fit him into the mainstream world, he is who he is. We know what most typical children with DS can achieve.

Original poster
Sahkoora · 17/04/2014 16:06

Thank you so much everyone. Luckily I missed the nastiness. I'm surprised actually, read through a few dozen threads on here before deciding to post and didn't see anyone being anything but supportive to people who made the decision to terminate. It was one of the reasons I decided to post.

Reading my OP back it does sound quite dispassionate. I think I was in shock yesterday, I'm really sorry if it sounded as though we had come to our decision lightly. We really didn't.

We have two DSes and if this situation had happened in either of my previous pregnancies, our decision would have been different.

Right now, this is the only decision that feels right for us, and I have no doubt that if it comes to it, it will be horrendous. I fully expect it to have a lasting impact. It will be something I live with for the rest of my life, and I am sure there will be many times I would regret it.

Even if we are lucky and there is nothing wrong, I am sure I will feel plenty of guilt towards my baby.

OP posts:
Poshsausage · 17/04/2014 16:16

You do what is right for you and your family it is no easy decision at all wishing you lots of luck for good results x