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Petrified. Just got 1 in 38 chance of Downs from Nuchal scan blood results. Advice please.

(132 Posts)
HeyThereSantasGirl Wed 31-Dec-08 11:05:14

I'm 38 years old and am 12+4 pg with much much wanted DC3.

I've just been called by Babybond with results for my scan and blood test for my nuchal scan. For my age I have a 1 in 112 risk of Downs, my hormone levels give me a 1 in 240 chance, but the adjusted score for me personally is 1 in 38. This is high risk.

I've just come back from seeing my GP who was lovely, but said that she thought it was a serious enough result to warraant a CVS.

I am PETRIFIED. I don't know what to do. I think I'll probably hve the CVS done. Although I know this carries a risk of MC. Although I don't know what I'll do if the CVS comes back positive for Downs. I have 2 other DD's (7 and 3) and a lovely DH who is incredibly supportive.

I've had 2 m/c before this pg, so it's incredibly hard to get these results.

DH and I are seeing private OB/GYN on Saturday to get some further information.

I'm just a soggy weepy mess at the moment.

Any advice would be very gratefully appreciated.

Thanks.

BlueCowNowIsLowingAndDCAwake Wed 31-Dec-08 11:10:00

I'm so sorry to hear that. It sounds like now you have the first result, you feel almost obliged to 'finish' the testing and find out for sure or not by having the CVS.

Maybe one step at a time. Test first, think about result of that when it comes in.

Hope you're going to be OK. I know you're not right now

dinkystinky Wed 31-Dec-08 11:10:46

HeythereSantasGirl - I'm so sorry you're going through this worrying time. A 1 in 38 result means just that - you have a 37 in 38 chance of having a baby who doesnt have downs. Ultimately having a CVS or Amnio is up to you - but it should give you a more accurate idea of the actual likelihood of your DC having downs or other syndromes. I'd suggest sitting down with your DH (is great he is so supportive) and drawing up your list of questions you'd like to ask the OB/GYN on Saturday - and discussing what you would do if the results remain worrying. Talking through things will help. I think there have previously been lots of other threads like this - which have included numbers which can be called to give you further info/help. Hopefully one of the ladies from those threads will be along soon.

Sparklyblue Wed 31-Dec-08 11:24:47

HeythereSantasGirl, try not to worry too much, as dinkystinky said you have a 37 in 38 chance of having a healthy baby.
One of my best friends had a 1 in 9 chance result of her baby having downs, I remember her being deverstated. She had the amnio done and after a worrying wait, found her baby didn't have downs. The little darling has just celebrated his 2nd birthday.

Ronaldinhio Wed 31-Dec-08 11:28:45

We had a low result from our nuchral fold test but like dinky our midwife told us that that meant that 15 other babies wouldn't have ds.
We had a blood test and it was all clear but it made us really think about what we were about.
I hope you feel better soon

ninedragons Wed 31-Dec-08 11:42:36

Bump this at night when Eids is around (she is in Australia).

She has a daughter who is, by all accounts, the light of all those around her. Even if you are the one in 38, she will go a long way to convincing you that it is very, very far from the end of the world.

HeyThereSantasGirl Wed 31-Dec-08 11:53:23

Ladies. Thank you all very much for your kind words and advice. I think to be honest, I'm in shock and can't see things clearly at the moment. DH is home from work now, and my mum and dad are coming up to help with DD's. So at least DH and I can do some research and see what we're up against.

ninedragons Wed 31-Dec-08 11:58:22

Shock is completely understandable.

You will get perspective here. The bald reality is that it's overwhelmingly likely your foetus does not have DS (would you bet your house on 1/38 odds? No way), but even if it does, there are far worse sticks you could be hit with in life.

HeyThereSantasGirl Wed 31-Dec-08 12:32:53

Hi Ninedragons. What you say is so true. I think I just need to try and keep it together til Saturday. Get more info from the consultant. Have the CVS. The cross bridges if we need to when we get the results.

Keep your fingers crossed for me.

PTA Wed 31-Dec-08 13:05:22

Sorry to hear about your results but as had been said you have a very good chance of your child not having Downs.

I can only add that as the mother of a 2yr old with Downs, it is not the worst thing that could have happened. He was premature and had to have an operation at 5 days. However I saw many, many children in a worse state during his hospital stay.

I remember thinking that although my child had Downs he would have a far better life than some of the children I saw.

Do some research, and, although it is not all hugs and smiles and I do have some dark days and worries about the future for both my sons, I would not be without either of them.

Try to stay positive and good luck.

mogwai Wed 31-Dec-08 13:11:13

I've just had an amnio this morning because of a 1/168 risk from nuchal testing.

I'm glad I decided on the amnio but have found the whole past month emotionally draining.

Would you condier waiting until 16 weeks for an amnio? The risk is (I think) half that of CVS and it also gives you more time to think things through.

I'm on the other thread about amnio if you want more info on what the amnio involved.

elkiedee Wed 31-Dec-08 13:24:26

It's a difficult decision to make and time to go through. I had a CVS with my 2nd a few months ago, and am now 36+2 weeks pregnant - we had clear results back.

The organisation AIMS - which has a website and telephone counselling helplines, was mentioned to me. It might be worth seeing if they can help you think through this, including what you'd want to do if the results come back indicating that the baby has Downs Symdrome. I hadn't completely decided but think that I would have preferred to be prepared.

If you do have CVS or amnio, find out how much experience those who do it have, as skill/experience can lower the risk a lot - I'm at an NHS hospital which has done combined nuchal fold/oodes testing for some time and perhaps has quite a lot of older mums, and the consultant who did it apparently has quite a good record.

rubyriley Wed 31-Dec-08 13:34:24

Hi HeyThereSantasGirl, I know it's hard but try not to worry. My friend had a 1:16 risk, mine was 1:42. My pregnancy was confirmed Downs by CVS (and sadly terminated), my friend (who was 41 and hadn't had a period since she was 34!)was too late for a CVS by the time she realised she was pregnant, but paid privately and had some fairly detailed scans which looked at baby's nasal bone, heart etc. & this decreased her risk (though of course it wasn't a definitive answer like the CVS) She went on to have a beautiful, healthy little boy who's nearly a year old now. I am now pregnant again and just heard today that full CVS results all normal and I'm expecting a little boy. Have sons aged 20 and 11 and am absolutely delighted. I know that we're not there yet but am making a conscious decision not so spend the remaining 27 weeks worrying about baby's health. When you've had a CVS and it comes back clear, the next worry could be the 20 week scan. Then what if it's stillborn? So I'm drawing a line here and living for the moment. Make the decision that's right for you and try not to worry about what hasn't happened yet!! Good luck to you!

HeyThereSantasGirl Wed 31-Dec-08 14:54:21

PTA Thank you for the positive thoughts about Downs. I know it's not the end of the world. I just need to research everything before making a decision.

Mogwai I think I will come and find you on the amnio thread. Thanks for the heads up. Hope the results come back clear for you.

Elkidee I will look for more info on AIMS. Glad that your amnio was clear. And hope the new baby rings you much joy.

Rubyriley Congrats on the great results. ANd your new son-to-be! And you're right. I don't know for sure yet. Will try and get some of that positive mental attitude going.

BBBee Wed 31-Dec-08 15:01:48

hello

i couldn't read without posting - not much i can think of to say except you are in shock and you need time to think, digest and think more.

Best wishes to you.

bunny3 Wed 31-Dec-08 15:20:13

We had similar results with dd1. I refused a cvs because of the risk of miscarriage (I'd already had 2 of these too) so I just continued the pregnancy and prepared myself for whatever might happen. It was a very hard few months but dd was born at 40 wks and she was absolutely fine, gorgeous in fact!

If you are in London, the Fetal Medical Centre in Harley St do a thorough test which is non-invasive. We had this when I became pregnant again and it was very reassuring (they basically do a nuchal scan but look at other things too). It was around £200 and well worht it.
here

BalloonSlayer Wed 31-Dec-08 15:47:40

Do you know what the actual measurement was, Santasgirl?

Your age is one of the things that make a great impact on the odds they give you. Whereas actually, it's the measurement itself that is crucial. I don't have my book any more which says what the measurements should be but I expect I will be able to google it for you. It also depends on how many weeks you are when you had the scan done. For example, may have this wrong but I seem to remember that the measurement is "normal" between 1mm and 3mm (?) and the scan has to be done between 11.4 and 14 weeks. So a measurement of 2mm at 11 weeks is not such a good result as a measurement of 2mm at 14 weeks because the baby is bigger. Don't take any notice of my mms though as I can't remember exactly what they should be.

Do you know, I know of four people who have had their pregnancy blighted by being told their baby showed Downs markers. None of their babies had Downs. I know of three people with gorgeous Downs babies. None of whom had a clue.

I had a 1:80 chance of Downs with DS2 after the nuchal fold test. I was told that at my age (43 on delivery) I could not have got a much better result.

DS2 was due just after my 43rd birthday. As he was due to be an elective C section I could have had him while I was still 42. I wonder if they would have altered odds if that had been the case. Mad isn't it?

NAB3lovelychildren Wed 31-Dec-08 15:56:11

Have to thought about why you want the results? Are they going to make any difference? If the baby does have DS and you would continue with the pg, why risk a m/c? You can still prepare without knowing ime.

everlong Wed 31-Dec-08 16:10:57

Hi there Santasgirl,

I'm sorry about your worrying results.

Just a thought and I hope you don't mind me mentioning it, but some months ago a friend of mine went to Babybond for this test and got worrying results, she then went to Leeds Fetal Medicine and got a total different set of results, much better.

She opted not to have the amnio and her baby was born perfectly healthy.

It's just a thought. Is it feasible to have another scan and blood test asap?

Good luck and I'm thinking of you.

everlong Wed 31-Dec-08 16:16:10

She went to Leeds Screening Centre, Gemini Park, Leeds.

HeyThereSantasGirl Wed 31-Dec-08 17:06:42

Balloonslayer Thanks for your reply. The nuchal transluncency was 2.40mm at 11+3 weeks. Although my LMP dates would have been 10+3. However an early scan at 6+3 put me one week ahead of LMP dates. Just wondering whether this might have something to do with it? I'm clutching at straws here. If you can point me in any direction of more info, would be very grateful.

Everlong I've just emailed another ultrasound centre to see whether I can get a second opinion. Obviously everything shut for New Year. But will be back on the phone first thing Friday. We're in Wimbledon so easy access to London if need be.

NAB I'm afraid I would need the answer. I would need to prepare myself for whatever I decided was right for me and my family.

Thank you all for answering this post. Especially on New Years Eve.

mogwai Wed 31-Dec-08 17:09:52

My nuchal was 2.7 at 13+1 (though scan said I was 14 weeks)

What about your bloods?

sarah293 Wed 31-Dec-08 17:11:58

Message withdrawn

everlong Wed 31-Dec-08 17:12:08

Did they give you a breakdown of your blood test result?

Good luck with getting a second opinion, I think it's a good idea.

BalloonSlayer Wed 31-Dec-08 17:24:50

Hi Santasgirl.

Try this page for some measurement stuff. I found it reassuring.

My friend who told me about the measurement/age thing basically said "you are NOT going to get a good result at your age." And she was right.

I think also you really need to consider the odds of 38:1

The thing is this: you have two children and are about to have your third. You would have to have thirty eight children, at these odds, in order to have one with Downs.

Or turn it around and imagine it's something you would want to happen. Would you gamble your last tenner on a horse with odds of 38:1? Nope, neither would I.

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