Not having Down syndrome testing- anyone else?

[amy246]

After being too far along for the nuchal fold testing, I have since declined the quad test. I feel that at 17 weeks I wouldn't want an abortion anyway. The only thing is I'm worried this is a silly idea and that I should have just had it done anyway. Any thoughts? Anyone else declined the test? I think I just need to hear that other people also did this.

Having had a baby with Patau's syndrome, I also feel the need to point out that Down's syndrome is not the only thing they test for.

I know that some people choose not to terminate even in the event of a terminal prognosis, but only referencing Downs skews the discussion a bit imo.

I didn't have any testing for my first 3 DC but had the nuchal fold measured and blood testing with this current pregnancy. I didn't want amnio or any invasive testing and wouldn't terminate but I've had 4 first trimester losses and I wanted to be prepared if this baby had a serious condition which might result in us losing him/her. We never found out why I miscarried previously( I was told I couldn't have testing due to my age) but the chance of it being due to chromosomal abnormalites would have been high. My background risk for my age (45 at the time) is 1 in 30 and it gave me some peace of mind to get a result back of 1 in 320, not that I'll relax fully till LO is here safe in my arms!

None of the literature I was given mentioned testing for Edwards and Patau and my Consultant didn't mention it either. Had they done so I may have consented but asked not to be informed of the Downs result.

Would the routine 20 week screening be enough to pick up any associated heart problems? That's the one thing you definitely need to know about in advance if possible, but if it's already covered then that's not an issue. But I agree that Edwards/Patau, though rare, are worth knowing about.

With my daughter, we didn't have the nuchal or bloods because we had already decided that we wouldn't terminate unless serious abnormalities showed up on the 20 week scan. My Catholic mother was a bit disapproving of us even having the 20 week scan. But one of my friends had to terminate because it showed up serious problems that meant even if the baby got to term, it would die in labour or shortly after birth. Why put both you and your baby through that? It was heartbreaking for her, and she still thinks of him as her child. That puts it in perspective for me.

With this pregnancy we decided to go for the nuchal and bloods because I thought I would need to prepare and educate myself in advance if we were going to have a disabled child. My own daughter was hard enough work in the first few months, I didn't want a shock.

I'd also seen an episode of OBEM where they knew a baby was going to have its intestines outside its abdomen, and it was born by CS and they were prepared for it. It made sense to me to be prapared for that kind of thing too.

Ultimately it's a very personal decision though, and people wil have different reasons for getting the tests or not.

I am surprised at the reactions some people have encountered from health professionals though. No one was judgemental with me either time.

The tests weren't routinely offered in my first pregnancy, and I declined them in my second. Similar to many if you, my age wasn't a big issue and I wouldn't have give ahead with an amnio so it didn't seem to matter what my number was.

I was also aware of the many conditions that aren't tested for. DD has one if these, so testing wouldn't have helped there.

However, I had excess fluid and underwent lots if tests to try find out why. In hindsight it would've been nice to know what it wasn't IYSWIM.

I'll accept the test next time, mainly because we'll have a toddler already when that baby is born so will want to be prepared.

Watching with interest as I'm undecided. I'm 36 and 13 weeks at the moment with no dc but 1 termination and 1 mc. My dh announced to me that he wants me to have every test I'm offered and to terminate if anything is wrong. I couldn't face the thought of another mc or termination and my gut is telling me to leave it to chance. We have friends with children with various disorders and I know life would be hard but id rather have children like them than no children at all and that downs video thats doing the rounds at the moment had me in floods but I can appreciate both sides especially what is being said about preparing for a potentially difficult birth my hospital doesn't have a scbu with the nearest one being over an hour away so maybe I should think about it.

I did have the test. Like many others here I would not have chosen termination regardless of the results. So, my reason? Because I was planning a home birth and a higher risk of DS or other positive results would have made me change my mind about having the baby at home and I'd have headed to hospital in case LO needed some extra help at birth.

I didn't with my three. On the last; the sonogropher very kindly told me (unasked) that the nuchal fold looked as it should, so it looked like all was well.
I could have kissed her, but on a thread a while ago I was told she was an interfering idiot who should have respected my request not to know . Very strange point of view.

The process of later pregnancy, childbirth and dangers to the baby immediately after birth are slightly different with Downs Syndrome (not to mention that they do test for other conditions) so I am always a little puzzled as to why people who would definitely not abort are then told "no point in testing". This would be an especially useful test if one usually had home births for example: babies with Downs Syndrome often have heard conditions so difficult choices might have to be made about where to give birth for the good of the child.

I wanted to know so that if it was the case, I could push for (or pay for if it came to it) birth in a hospital that has a reputation with Downs and get in touch with specialist MW and HV early, read up, join groups who support children with Downs etc'. Basically prepare. It was a protective measure for my child.

My risk is very low in the end, meaning I can plan perhaps a slightly less medicalised birth without that worry.

I think a lot of our responses here show that we don't really give informed consent either way. I hadn't thought about the need for specialist support after birth. Maybe our midwives should actually give is that information?!

I have had the nuchal fold/bloods both times, not because we were certain we would abort for anything it found but so we were prepared - especially because we were planning a homebirth both times.

I chose not to have them as have had enough stress falling pregnant through IVF, there would need to be something VERY VERY wrong with my child to even consider having a termination. As far as I am concerned knowing there is an increased chance of disability for my child would add stress to my pregnancy that I do not feel is necessary and if god forbid something happens I will deal with it appropriately then.

In some hospitals, the NT test is just for Down's syndrome.

I declined it with DC1 as we would never consider a termination anyway.

I knew something was wrong with DC2 (just had a feeling) and decided to have the test so we would be better prepared. DC1 was born at home and I didn't want a baby with problems to be born at home and wanted to make the best decisions in terms of where to be born.

As it was, her NT was 11.4mm and it became very clear that she was unlikely to survive to term. We declined all invasive testing and termination. She was stillborn.

With DC3 and DC4, we've been under Fetal Medicine and decided to have the test done as part of their work up, which has involved a lot of extra scans. All the results (so far, 14 weeks with DC4) have been reassuring, but even if they hadn't, we wouldn't make any different decisions. I don't want the risks of invasive testing, I would never have a termination, but given the health problems of DC2, we want to make sure that we know of any issues so can make the best decisions in terms of delivery, baby's treatment after birth etc.

I stand by my decision and have no regrets. I am under consultant led care and will be giving birth in hospital with SCBU next door. There are no specialists in our area and so provided that the 20 week scan is normal then I don't see a problem. I understand that many would like to prepare themselves but if it happens we will deal with it. I know that I worry too much and get very stressed. If I knew my baby may have Downs I would worry all the way through and it wouldn't be good for the pregnancy. I worry enough as it is!

I am 17 weeks and we declined the tests simply because we wouldn't have ended the pregnancy. Nobody has questioned this either.

AnythingNotEverything - All the points about delivery (mode and location) and support immediately before birth were made to me when I was discussing whether it was worth having bloods as well as the NT measurement. The MW pointed out that, if they knew that there was a high risk of Downs, the hospital could also plan. So you might choose a planned section so that a specialist paed could be present. You might choose to give birth at a different hospital with more experience. That really made sense to me. I'm surprised how often women seem to have not had this mentioned.

Penguin - sounds like you got great information. I think my midwife and student didn't want to go into the detail and yet I think I had to sign to say I was able to make an informed decision. I thought I did, but reading this thread there's loads I hadn't thought of.

It's sad how variable the information seems to be isn't it?

I was in two minds about it as I was pretty sure I wouldn't risk an amino if high risk, and wouldn't terminate for downs, (although I'd consider it for other conditions). My midwife actively said there was no point if you wouldn't act on results, and although some women said they wanted to be prepared, in her experience they spent their pregnancies being worried, so we decided not to be screened. I'd never heard of harmony testing at that point. Mostly I am happy with my decision, but I do wondered if I might have changed my mind if I'd known I could pay for a harmony test privately if I came back high risk.....

Thanks for all of your replies, it's been nice hearing of other people's opinions and experiences. I definitely don't regret my decision and feel a lot better about it now. It's definitely a personal choice and I'm glad my midwife didn't pressurize me. Thanks again everyone :)

Im having the nuchal fold tests but wont be aborting whatever the results im 12 weeks today and both dp and myself have agreed whatever happens its our baby.

As a poster further up thread said it means that doctors can manage the birth better if they are forewarned.

I declined the downs test as I wouldn't have wanted to terminate and just wanted to enjoy my pregnancy without undue testing which would have worried me. It was the right decision for me but the medical profession do try to steer everyone into their routine programme of tests.
Stand strong and make your own decisions - your life, your baby.

And yes I declined the test.