testing

[Thomcat]

A question for mums with children with SN and esp those with children who have DS -

Do you think that if women are having Nuchal Fold tests done to find out if their child will have DS they should pay for it or should the NHS provide this test free of charge to all women automatically?

Discuss - ?????

Should definitely be offered free of charge but only if the women requests it.

TBH to me its a grey area. the triple/quadrauple test is offered everywhere isnt it? should the blood test and scan be offered together? cos each one isnt 100% and just gives a risk factor. I possibly think it should be offered free, or if tha isnt plausable then cheaper. In RL i dont know anyone who has had the nuchal fold scan.

Interesting TC. I was offered the nuchal fold test as a routine part of my 12 week scan (I think) free of charge, but not the triple/quad blood test (so no misdee its not offered everywhere).

TBH - I don't think i was actually asked if I wanted it, they just did it as part of the scan and then gave me the result.

I'm not 100% sure what I think, but I think it should be free of charge but agree with BH only if the woman requests it. For that to make sense then the woman (and her dp) need to be properly counselled beforehand to explain what the test is, what it can show, what the next steps are, and also (my bugbear!) what it doesn't show... a leaflet isn't good enough IMO.

Interesting thought though, that they should have to pay - would that make people think a bit more about what it meant I wonder? that can only be a good thing.

it isnt? i thought it was part of routine bloods taken. I was offered a seperate blood test with dd2, cant remember what it was, i did actually have it done without thinking about it tbh, but then spent 2 weeks worrying till i got the results back. after that i vowed never to have a test done for DS or spinabifita (sp) as it put a downer on that stage of the pregnancy for me. i actually think copnselling before tests would be very beneficial, all i was told was 'it gives u a risk factor'.

I used to babysit a boy who has DS (is that the correct way of putting it, or is it something else) and i think it some way that helped me see people (everyone) differently regardless of looks, disabilities, etc. he was actually pretty goood compared to his younger brother who acted up.

It should be offered free. Why should it only be available to those who can afford it?

FWIW, it was free when I was expecting both DS1 and 2 and I was never offered the test Missdee mentions.

HITC - you have totally tuned in to me and my thoughts. It should be free, yeah, but if it wasn't would it make people think more about why they are doing it and what they would do with the results? I don't know? I just know that the whole test, DS result, termination on a plate thing makes me uncomfortable. Yes I agree 110 per cent that a leaflet should be produced about what these tests don't show and also explain the UPS and downs of Down's.

i think some people see scans as just a way of seeing their baby. they forget they are there to check things are ok. this time i have really been put off scans, i think its the impending one at guys that scaring me and making me worried.

I wasn't offered the blood test the first time around. I was offered the blood test the second time around (we'd moved to a different part of the country) but I declined. No mention was made of the nuchal fold scan either time so I don't really know that much about it.

I think I would feel uneasy about an antenatal test only being available if you could pay. Are there other antenatal tests which can only be done privately? (Genuine question btw - I really don't know).

I agree that women should be given all the facts about tests/scans before going ahead with them. I also think that if a test is positive for DS then women should be offered as much information as possible about DS before deciding whether or not they wish to have an abortion. I've known women IRL (acquaintances rather than friends) who say they would have an abortion if they knew that their baby had DS, but when asked what they actually know about DS they admit that they haven't a clue. I find that very sad.

My typing was so slow that I missed all those other posts!

i think some other private scans to findout the sex of your baby. i know they wont tell u here. (high area of girls being aborted sadly)

Exactly Coppertop and that is what worries and scares me about this testing.

wasn't offered nuchal fold scan first time - but was offered blood tests.... ( 2002) This time was offered everything under the sun including a fetal cardiac scan, a nuchal fold, blood tests etc. Of which I chose none.

Not sure about here in Aus - I think I recall the GP saying with my history I would have been offered a nuchal fold but my impression is that it is not routine iykwim.

However - ( in the UK) that did not stop the sonographer at my 13 week scan from having a good look at the nuchal fold and doing a couple of measurements EVEN after telling her we did not intend to have one.

My 20 week scan ( aus) was very detailed and one of the things they did check was the nuchal fold esp. after finding the very soft marker for ds in the heart.

eidsvold, hows it going with this pregnancy?
when they say soft marker what exactly do they mean? and how many soft markers make a hard marker so to speak? its very confusing.

misdee - all is well although I am getting very huge and uncomfortable unlike last time... gp says size is spot on for dates - just feel like a heffalump!! So counting the weeks - finally got sorted to get the baby's room painted - not that they will be in it for months... we had to get dd's room painted first and then move her out of what is now the baby's room. Once that is done I will be ready to have this baby - BUT have 4 1/2 weeks til due date.

posted more about the scan and the soft marker here

basically dd's heart defect is a called a hard marker in that had she be born without down syndrome it would have been incredibly rare.... usually her heart defect and ds go hand in hand.

not sure how many soft markers make up a hard marker..... hard to say - although in terms of soft markers - and as we did not have a nuchal fold I can't say what that would have been....

sorry for hijacking

it should be free but shouldn't be part of the routine scanning done. And all screening (and certainly diagnostic) tests should only be done after counselling the woman/couple.
I read that since 2002 more babies with DS are terminated than born each year, which is such a sad statistic . People with DS give so much to society.
I was offered the triple test with my second pregnancy (which resulted in lovely dd with DS) and declined. There was no explanation of what it was but I knew from baby magazines and books.

Yeah i heard that geekgirl and that makes me so sad and frankly worries me as well. Feels as if some people out there want people with DS to become extinct.

barts test!! that was the test i had with dd2.

Never even heard of that rtest missdee

heres some info brats ttriple test

i remeber the barts test was done differently to usual blood tests as if i remember correctly it was larger vial and the blood wa sdrained onto a crystal like substance.

oops, barts not brats.

great typo misdee - now, if I could have a test to find out if my kid would be a brat or not, that would be worth it!!

H ahh, yes a much more useful test!!!!!!

Where can I sign up for a brats test?

I think part of the problem is that women are almost expected to have a termination if they find out that their baby has DS. My own MW was completely supportive of my decision not to have the triple-test and wrote on my notes that it had been discussed and that I had decided against it. When I had my booking-in appointment at the hospital the MW there looked at me as though I was insane to say no and wrote "DECLINED" across my notes in big red letters.

Makes me so and that kind of attitude.
Wish narrow minded people could be detected in a test before they were born!! Sorry, an angry comment but one I feel like making anyway.