Anyone else chosen not to have NT scan/downs screening?

[Holly94]

Just had my midwife booking in appointment and she went through all my scan options with me.
I chose not to have the nuchal translucency scan or downs screening blood test as I wouldn't have amniocentesis/CVS anyway and I wouldn't choose to terminate so if it came back with high odds I'd just spend the next 28 weeks of my pregnancy worrying sick!

Just wondering if anyone else has refused the downs screening?

The combined screening test offered is only for downs.

I declined,I was happy to go along with whatever was thrown at me so didn't think there was any point.

Dh was not happy and I felt pressured but actually sat up during the scan and said that I absolutely wanted to make it clear I didn't want it done.

I also declined the HIV test too-huge pressure again but I stuck to my guns.

Do what is right for you OP

valium DP wanted to have the combined screening but he didn't seem to understand that it was a probability, not a yes/no answer! I told him under no circumstances would I be undergoing amnio if the odds were high so we were better off not knowing and having the unnecessary worry.

I declined when pregnant with my son. Seemed pointless as wouldn't terminate anyway. Would do the same if ever pregnant again.

It gives a probability for chromosomal abnormality. Downs is an example of chromosomal abnormality, others include Edwards syndrome, Turners syndrome and Patau syndrome.

i had whichever tests were available to me with first two and luckily they are healthy.

i will have whichever tests are offered this time as well and in most likelyhood consider termination if it highly likely the baby will be disabled.

i have worked as a support worker with disabled adults and seen what problems they and their families face as they outlive the parents and siblings often have to step in or carers take over.
i would hate to put that responsibility on the children i already have.

i know his isnt everyones view but its mine and one i feel quite strongly about. having said that if the scans failed to pick up on any problems and my child did have a disability i would love it regardless once it was here but i doubt i would knowingly choose a life of disability for my child.

Holly - I've opted out too for the same reasons. This is dc4 and am now 15+3. I don't regret not having it either. Still had scan for dating and will have anomoly at 20 weeks (so I can have another peek)

Wishing you a healthy happy pregnancy x

Holly - I was planning to refuse all screening for the same reasons as you but they did an NT without asking me and it was high. I have to say it ruined my pregnancy I have a brother with Down's syndrome and so am well aware of the challenges i was potentially facing. I refused CMV and amnio but spent 6 months worrying. Dd is now almost 10 months and was born healthy I really struggled (and still do) with post natal anxiety and I think that NT result contributed to it. I suppose you need to think what will best relieve your anxiety having the tests and knowing or not having them & worrying about not knowing.
Good luck with your pregnancy.

I wasn't going to bother with testing but while I was in the early stages of my first pregnancy a family friend unexpectedly had a baby with DS and said that, although they wouldn't have wanted a termination, they wished they'd been prepared. I ended up having the testing and got a reassuring result. In this pregnancy my result came back 1:535 which is low risk but much higher than my previous pregnancy and double what my age-related risk is. I'm now anxious although I know that everything is likely to be ok and I wouldn't terminate the pregnancy anyway. I really really wish I hadn't had the test. I would say that if you know you wouldn't terminate the pregnancy then why get a test result that could potentially worry you for the rest of your pregnancy.

Oh, try not to worry Cake - less than 1 in 500 is really very low when you think about it - less than 0.2% I think.
Probably the same risk as if you were having baby in a year or so's time ?
You wouldn''t be that worried then would you ?

Just try to pretend you hadn't had test and haven't been given any figure to worry about ?
Clearly for some people the test doesn't make any positive contribution in their pregnancy. I guess it's not for everyone.
Shocking that woundbobbins scanners apparently did NT test without asking for permission, that's not good.

I don't do it, was happy to leave it in the lap of the gods, I just forgot about it....until the moment he was born and I was shouting "is he ok? " ...which we all do anyway, test or no test!

I didn't have any testing in my first pg, and have had my booking in appointment today for no. 2 and declined again.

Most of my reasons are already outlined above by other posters, but additionally my sister has profound learning disability and multiple impairments which were caused by brain damage due to meningitis when she was 5 months old.

The vast majority of impairment/disability cannot be detected prenatally. About 80% of disabled people were not born with their condition.

Having grown up with someone with profound disability, and now as an adult taking increasing responsibility for her care, I can without any doubt say that I would not change a thing.

I don't think my mum would either.

I refused. But they did it anyway with the HIV test. Midwife phoned me on my birthday to tell me my baby was high risk for Downs and trying to convince me to have further testing. I was so angry. We spent the next 5 months not knowing.

He was OK. But it put a downer on the pregnancy and it was my first

Hi, we declined the tests, also because we wouldn't abort the pregnancy if they came back positive. My dhs sister was Down's syndrome, so a real o brained for us.

I think you mean she has/ had Down's syndrome Spookey, not 'was Downs..'

I didn't in my first pregnancy. Due to uncontrolled diabetes at time of conception I had a 1:9 chance of birth defects, (luckily didn't happen) so the odds of 1:500 for downs seemed so small in comparison to that that I just thought it wasn't worth worrying about. In my second pregnancy, which was planned, I was a bit older and did have the test as I started to worry about 'what if'. The test itself was a few days of anxiety but luckily got a very low risk so was worth it not to have to worry anymore.

Hi, I'm 23 weeks with my first, didn't have the screening for the same reasons as you. It really is a personal choice I think.

I didnt have it with any of my 4 and havnt had it this time,for the reasons you stated op.

I had it with all three of mine, but only did the blood screening on top of the NT scan with my third. He came back 1 in 34, cue panic as I also wouldn't terminate. I refused invasive testing and spent 20 weeks worrying and researching myself stupid, before finally having a late amnio at 32 weeks. The only risks then are of premature labour, which are the same, 1 in 100 or so, as pregnancy loss at the earlier gestation. DS had typical chromosomes and so I could at least spend a few weeks not worrying! If we had heard differently I would have had time to prepare emotionally not to mention do even more research.

However that nightmare was three years ago. Something anyone facing this decision should now know if you don't already is that there is a very very NEW non-invasive blood test only recently available in the UK that gives you a 99% result from as early as 10 weeks. Essentially if the test is negative, baby is pretty much not likely to not have Down Syndrome. If the test is positive, baby is 90-99% likely (depending on the stats you read), so you can decide what to do from there. It's called Harmony (there's an equivalent called MaterniT21 in the US) and boy do I wish it was around a few years earlier. It's not cheap, but I would have paid that for peace of mind. It will probably roll out to the NHS eventually, but not any time soon.

The regular blood screenings can also reveal non-genetic issues - for instance I had low PAPP-A (this was the main cause of the screen positive) which, for some women, can mean issues with the placenta later on, and it meant I got an extra scan for growth. DS was fine, but he could so easily not have been as happened to a friend who also had low PAPP-A, later growth restriction and a necessarily early delivery of a now very healthy little boy.

It's all a hugely personal decision, but I firmly believe before making that decision that people should be aware that there may be more choices they didn't know about and that the standard NHS blood test has uses beyond screening for DS.

The Harmony Test is only available at Harley Street in London though, isn't it?

I have a friend who has a DC with DS. She had a risk of 1:136000 or something like that, done at Harley Street....

I think there's a few places that do it, not just the one, but I presume they're going to be centred on London in the short term anyway, such is the way of these things.

Given I'd heard some women were flying to the US to get it done three years ago, a trip to London from most parts of the UK would probably still be worth it to many people.

Useful MN thread www.mumsnet.com/Talk/antenatal_tests_choices/a1599017-Harmony-prenatal-test-anyone-know-about-it

I refused all three times. I suppose you have to decide early on whether you would carry and give birth to and raise a baby with genetic problems, or whether you couldn't go through with it and abort or if you'd like to know early on and prepare for an ill baby.

Like fakebook, I also declined with all three pregnancies. I was 42 when I had my dd. There was all sort of flap from consultant when I refused to change my position.