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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

I'm seriously considering not testing for Downs

42 replies

Ladypug · 05/04/2015 19:37

Is that really bad? I just keep thinking I'm not going to do anything about it. I won't have the amnio test and I'm so worked up about having it, I wouldn't abort a child with Downs, what's making me think I should do it is that it's the "done" thing! Open to advice x

OP posts:

VivaLeBeaver · 05/04/2015 19:40

If you wouldn't have the amnio then is there a point? If you had a raised risk would it just spoil the pregnancy for you?

There's an argument that you'd be prepared.....and of course if you had a low risk then you can kind of relax.

There's an argument that a raised risk could then be followed up with more detailed scans to check for possible cardiac problems, though these may well be picked up on anomaly scan anyway.

jaynebxl · 05/04/2015 19:41

We never tested because we knew we wouldn't do anything either.

GwenStacy · 05/04/2015 19:42

I didn't have any testing done did Downs because it wouldn't have changed anything for us. I was low risk though.

TinyMonkey · 05/04/2015 19:43

You don't want the test so don't take the test. The only thing I would say is that knowing in advance can help you prepare a bit and get some support in place.

Bear in mind that the combined test is also for Edwards or Patau syndrome which you may decide to terminate for, rather than suffer a late miscarriage or stillbirth.

batfish · 05/04/2015 19:44

I don't think it's bad, I have tested but I can't say for sure that I would be OK with it but if I knew that whatever the result the outcome would be the same then I wouldn't bother. The only thing I would say is would you feel the same about Edwards or Patau? Because I am sure a lot of people who would be OK with Downs wouldn't be OK with them and so may want to know if there is any likelihood.

But it is a personal decision and if you have decided that you won't act regardless of the result then that's totally up to you and you shouldn't have to explain yourself to anyone else, I don't think it is bad at all that you don't want to test.

Original poster

Ladypug · 05/04/2015 19:47

That's what's really changed things, I I found out that where I live doesn't test for Edwards or Patau, only Downs and it's them I worry about, not Downs x

OP posts:

Original poster

Ladypug · 05/04/2015 19:47

Ps thanks Batfish

OP posts:

TRexingInAsda · 05/04/2015 19:48

I thought exactly the same with my first pregnancy, but got pushed into it by the midwife who made me feel really stupid for not wanting the test. The second time I flatly refused, and they didn't try to push it on me. Maybe it was a better midwife, but I found a lot of my opinions/requests were respected much more in the second pregnancy. Both pregnancies, all the health professionals' first question was 'is it your first?', and I felt like this meant 'shall I take anything you say seriously or not?'!

Quitelikely · 05/04/2015 19:49

It's only a marker test. I declined it and reasoned that any abnormalities would show on my scan.

AnaisB · 05/04/2015 19:49

I think there's something to be said for coming to terms with having a baby with Downs syndrome before the baby arrives - even knowing that there's a higher chance might help.

Of course its personal choice though, nothing "bad" about whatever decision you make.

Artandco · 05/04/2015 19:49

I didn't either. I figured even for pataus or worse I would carry on as usual as let nature happen as and when

Tranquilitybaby · 05/04/2015 19:55

Of course isn't bad, it's totally your choice. I guess the only benefit is you'll be prepared emotionally but then the test isn't totally accurate unless you have Harmony or similar. X

GotToBeInItToWinIt · 05/04/2015 19:57

Not bad at all, why would it be? I know quite a few people who haven't tested for the same reasons you put in your OP. I had the test, not because I would abort but because I would like to be prepared and understand as much as I could about it before giving birth. It's entirely up to you.

Original poster

Ladypug · 05/04/2015 20:00

I've done loads of research - hours and hours. I've found several cases of women who were told they were low risk and had a baby with Downs and many who were high risk and had a perfectly normal baby not to mention the amount of threads on here freaking out about nuchal measurements and the difference between a private and an NHS test results and it seems so approximate and sketchy. I would never have amnio - I know someone who miscarried due to this and I keep thinking why am I doing this? Because it's the "done" thing? What difference will it really make to my decision? X

OP posts:

NoodieRoodie · 05/04/2015 20:03

I'm currently pregnant with DC3 and haven't had the test in any pregnancy.

I agree with TRexing though. In my first pregnancy the midwife really tried to push me to test to the point that I got quite cross and pointed out that my Dsis is SN and I'm Catholic and don't believe in abortion the last bit may not have been totally true

Second time round the midwife asked once and accepted my answer. This time the midwife asked if that meant I didn't want my bloods done or any scans as well!

DrLego · 05/04/2015 20:06

there's no point if it wouldn't affect what you would do anyway. It's not without risk - why risk losing the baby (small but present risk) when you wouldn't choose to, what, terminate a pregnancy? It makes no sense to have amnio or CVS. A nuchal fold scan may indicate an increased risk, but this is at least non invasive and routine. These tests are not foolproof and are not without risks and are only worth those risks if it would change what you would do with the knowledge thereafter.

madreloco · 05/04/2015 20:07

Most of the world doesnt. its hardly unusual.

Theas18 · 05/04/2015 20:13

My kids are older but I had no downs testing. I had 20 week scan that nowadays would be even better at picking up serious heart defects - that's what I'd worry about with downs not the downs itself.

PterodactylTeaParty · 05/04/2015 20:14

I turned down the test for the same reasons as you, OP. (I'd probably have gone ahead if they tested for Edwards or Patau where I live, though.) Midwives were fine about it.

Cleanbean · 05/04/2015 20:17

No I never had any screening tests with my pregnancies and my midwives never pushed it.

dinoswore · 05/04/2015 20:18

I don't think it's the 'done thing' at all.

I didn't have screening for this in any of my pregnancies (though it was offered). Really, no biggy.

ChocolateBiscuitCake · 05/04/2015 20:19

Have you thought about the harmony test? It's a blood test that gives a 99% yes/no to Downs (or similarly high %).

You may not want to terminate, but you may want to be prepared? I have two friends (both well under 40) who have Downs babies (they didn't want to test), but say the hardest part was letting friends know once their babies were born, especially amid all the excitement of letting people know that they had had their baby.

GotToBeInItToWinIt · 05/04/2015 20:31

I don't think it's the 'done thing' particularly. Some people have it, some don't. It's an individual decision.

Ikeameatballs · 05/04/2015 20:43

I feel a bit ambivalent about testing for DS.

We (as a healthcare system) test for it because we can. I appreciate that many people chose to terminate for DS but there are many conditions that have associated learning difficulties and health problems that we don't routinely test for because it's not as easy to do. I feel that the DS testing gives parents a feeling of choice and control that isn't really there to the degree that it is perceived by the public as a whole.

I don't think there is any right or wrong and if you wouldn't terminate and feel that a risk factor alone would be unhelpful then testing probably doesn't offer you any benefits. I would have wanted to know in pregnancy to be better prepared, for some women it might help them in making a choice as to where they give birth.

anxiousannie10 · 05/04/2015 20:46

I had the the nuchal blood screen and wish I hadn't now, they told me I'm 1 in 20 for downs only. It has caused weeks of stress for me and my partner, arguments and he can't bond with baby anymore.
I took the Harmony Test which is none invasive and it has given me a 1 in 10,000 chance of downs and other two.
£500 but Worth the money for peace of mind.

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