Screening for Downs syndrome in Wales - what's the proceedure?

[SadPander]

Hi,

I have my 1st midwife appointment and 12 week scan in 2 weeks time - in the mean time I haven't seen a midwife and don't have contact details for one, so hoping someone can help me understand this a bit better.

From others' posts (perhapss I have misunderstood) I thought that I would know the chances of our baby having Downs Syndrome at the 12 week scan. But reading the screening booklet I have been sent it says that blood test will be done at 15-18 weeks and it doesn't mention if/when a Nuchal fold test will be carried out. I've googled but not found a great deal of information but did find something that said Nuchal fold tests aren't offered in Wales. Can anyone confirm what the proceedure will be?

I'd thought that if all was okay at the 12 week scan we would start sharing our news, but if bloods aren't done till 18 weeks I don't suppose I will have any results until my 20 week scan. Now I'm not sure if I want to start telling people before i have this information.

Hi

I'm not 100% but I'm in London & I'm sure it was after the 12 week scan.I think I made the appt after my scan all came back ok.It was for a few weeks later.The 20 week scan is the big one.Looks for all defects so its your choice when to tell people so if it makes you feel more comfortable share the news when you reach 20 weeks ;)

Hiya SadPanda, I live on the Wirral and was offererd the nuchal fold test at my 12 week scan. Bloods are usually taken at 16 weeks for downs syndrome. Good luck and just tell people when your ready to.

Thanks both. I'm excited to tell people, but I don't want it to become common knowledge while there are still so many uncertainties - just impatient now! As you say though the 20 week scan is the big one and I guess there would still be a lot of uncertainties until then anyway. Think I may try to keep things quiet until then.

Nuchal scans aren't offered on the nhs in Wales, sorry! You'll get a triple test at around 15 weeks, results take 2 weeks I think, then the anomaly scan at 20 weeks. It's rubbish isn't it?

You can get it privately in Cardiff though I believe.

Hi Amandine thanks for confirming this. Seems a bit rubbish! Do you know the reason they don't offer it? Should I be concerned and get one privately, or will I get just as accurate result from the test at around 15 weeks do you think?

My MW told me, both 6 years ago and last year, that it's a 'training issue' (which I translated to 'funding issue' ). I didn't pay privately, my triple test results were both absolutely fine so that was enough reassurance for me. I suppose it depends on how strongly you feel about it, and what you would do if anything was found. I always thought that if my triple test results had been bad I'd have requested a really detailed scan then and gone from there. It's entirely your decision, I think they do them in the Spire hospital in Pontprennau so perhaps phone them and ask how much it costs and see what they have to say?

Good luck

Neiter the bloods or the nuchal are definitive tests. They will give you a probability not a yes/no.

It's not offered where I live either because its not totally reliable.

Amandine I am in Cardiff so Spire would be an option. I'm probably just worrying about nothing, as you say if the triple test results come back with any cause from concern then I could go private for further investigation. Just feel like maybe I'm missing out if most areas offer them. Still at least we get our free prescriptions, guess you can't have everything! Thanks for your help.

Wisp I realise that it wouldn't give me a definitive answer, just thought it would be reassuring to have some indication at the 12 week scan, as it would make me more comfortable about telling people. Also it was just something I assumed I would have as I've heard people on MN talking about it. I wonder if it is down to a reliability issue or funding? Still at least I know before I get there that I wont be offered it. Thanks for your help.

I thought it was a funding issue. I got NT scan done at Babybond in Cardiff and the results were very fast. Since then I have used Innermost Secrets out at Cardiff Gate for a Harmony test, they also do NT scans I think and the consultant comes highly recommended.

HTH

If you are in Cardiff then I assume you are having your scan at UHW. They did a NT measurement with my pregnancy at 12 weeks I was furious because I had planned to decline all screening but they measured the NT without my consent my raised NT ruined my entire pregnancy (dd now 8mths & healthy).

See that has annoyed me now because I had mine at Nevill Hall for second pregnancy which turned out to be abnormal and we terminated, anyway they didn't measure the fold and after our private tests I looked at my 12 week scan photo and it seemed huge so I wondered why they hadn't said anything to me (they didn't even offer to measure the nuchal fold for me).

bobbin Sorry to hear that is spoilt your pregnancy for you (but glad you had a good outcome in the end). Bingo so sorry to hear about your awful experience. I appreciate its often a funding issue but I strongly feel that you should be offered the same level of care where ever you are. It seems crazy that they would do the proceedure for someone who doesn't want it, but not for someone who does and who it would have been useful for.

I will be in UHW so will report back on if I'm offered a measurement.

They didn't offer it, bit disappointed. Now sitting with my scan and google image results trying to see if it looks normal. Bad idea!

Oh no, don't do that, that way lies madness! I am sure all will be fine.

Haha thanks Bingo, I'm doing my best to just not think about it for now- don't need anything else driving me mad!

Spend any spare time you have sleeping ;)

You know until you said that it hadn't occured to me that I only have 6 months of proper sleep and lie-ins left! I will definietely follow your advice!

Everyone warned me about the lack of sleep but I still found it a horrendous shock! I do like my sleep though.