Confused about screening options/tests -can anyone help?

[hattyyellow]

My hospital offers a quadruple blood test at 16 weeks.

Because I'm 33 and confirmed that we would like to know if the baby has any likely problems or disabilites - the hospital referred me to our nearest screening centre in Leeds.

They offer a nuchal fold scan and quadruple blood tests for £190.

I asked why I couldn't have the nuchal scan done by them and the blood tests then done by the hospital but they said the NHS would not compare the two to give me an accurate idea - it would be up to us to decide what the risk was if the bloods and scan contradicted eachother..

Is this right? It seems a bit churlish of the NHS not to help interpret the results...

The clinic also offers screening for fragile x syndrome and spinal muscular atrophy - indicating that the carrier frequency for fragile x is 1 in 150 and spinal muscular 1 in 60 - but the costs for screening these as well take the whole thing up to £400-500!

If you opted for screening, did you go for all the options? Do most people just test for Downs because this is the most common likelihood?

I'm 33 so my chance of carrying a baby with ragile x or spinal muscular atrophy seems higher than my risk for Downs - so why is Downs the most common thing to be tested for?

Confused.

hatty

I don't know about the other tests but my local hospital offers a combined test. This involves a nuchal scan combined with a blood test - taken on the same day at about 12 weeks.

From my research this seems to be one of the most accurate tests. I believe it picks up 85% of Downs syndrome babies as compared to about 75% with just the nuchal scan. From this I got a risk of 1:50 but I am a lot older than you!

However, I would like to mention that once I had a high risk screening I really really wished that I hadn't had it done. The next option for tests is then to have either a CVS or Amnio, both of which run the risk of mc. So I didn't have those done and had a lot of worry in the process.

I see, thank you both very much.

Have booked blood tests and scan together to get highest accuracy.

Cupcake were you happy with the Leeds clinic? It looks fairly professional...

Thanks cupcake it sounds great! How sweet of the consultant to re-do the scan for your husband .

Were you able to find out the baby's gender from the nuchal?

DS is tested for because it can be. Also traditionally it has been easy to pinpoit a group at higher risk (women over the age of 35) - so I guess it was easy to direct resources - that led to the development of further screening tests (can direct resources more accurately with screening).

There are many more common conditions (autism for example) which cannot be tested for.

Thanks getbackinyouryurt that's really helpful.

Hatty
That is bobbins that the NHS won't compare the two - I'm 36 and had both the nuchal fold scan and the bloods done at Chelsea and Westminster in London and they gave a combined risk. I'm afraid this is just NHS postcode lottery stuff. Good luck with the tests anyway. My results were reassuring (third dc)

Hi Hatty

I'm not answering your question, as I don't know why, but I'm surprised to hear your nearest screening centre is Leeds! I didn't realise you were near to me! I'm going to the Leeds screening centre tomorrow for a private nuchal fold. It costs £100. My MW told me that this was more reliable than the bloods and that I wouldn't need them too. She also told me that if it comes back as a high risk, that they have to refer you immediatley back to NHS for CVS (should you want it).

I don't know why I would only opt for this test and not the lot; I suppose that the money is a big factor, and the thought in the back of my mind that testing doesn't guarantee that nothing goes wrong.

I'll let you know what it's like there!

Small world...

petitfilou - I think it's more an age thing than a postcode lottery thing (or maybe a bit of both). In my area I believe that combined is offered from age 35, but below that just the triple test.

hatty - 'Do most people just test for Downs because this is the most common likelihood?'
No, lots of people decline all testing, because the results wouldn't affect the outcome of our pregnancies. Do take some time to think about what you would do with the results, as if the answer is 'nothing' then it's just money down the drain!

Hi

Just wanted you to be aware (and i'm sure you are but a few people don't realise) that many disabilities can't be tested for, or happen at birth, so just bear that in mind when deciding whether to shell out.

Also at 33 you really are still quite young - your chances of a healthy baby are god.

Hope the tests go well.

Abbey that's extraordinary! I didn't realise you were near Leeds too. It's a good hour and a half for us to get to (we are pretty North of Leeds) but is the nearest place to go to apparently...do let me know how you get on. Hope you're feeling okay.

Can'tsleep - I do see what you're getting at. I think we'd like to know if our baby was Downs as we'd like to prepare ourselves for that eventuality before it arrived.

I think I'd find that slightly easier to deal with than finding out at birth - obviously it's not something I've had to deal with before so I am not an expert on when the best time to find out would be..

Peachy completely see where you are coming from too. I do see that the tests can't predict everything.

And I thought 33 was relatively young, but not according to my consultant!

Cupcake I'm 11 weeks and will be nearly 13 weeks by the time I have the test, so around the same timescale as you.

Useful to know that the NHS do take into account the results!

we took the prepare ourselves option with ds3, the bloods came back high. because we wouldnt risk amnio (no nuchal locally at that time), we basically ruined the rest of the pregnancy with worry.

With ds4 refused all tests bar scans.

I am not anti testing per se, but know from experience that simple decisions can become complicated easily