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Pregnancy

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

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Original poster

Declining the screening tests in pregnancy...

45 replies

santabringmeababy · 29/12/2009 19:02

Hi All

I have only just found out that I am pregant-it is early days and I am keeping my fingers (and toes) crossed!

I have been surfing the net as you do when you first find out you are expecting and am feeling a bit down to be honest. I am 36 and nearly all the websites seem to go on and on about the high risk of downs syndrome etc and it seems totally normal (a bit expected even?) to get all the tests done, some of which seem frankly scary1

I declined the triple test when pregnant with ds (3) and also the nuchal fold test (but they blooming did that anyway- the cheek!) but am now getting really worried and paranoid about declining the tests again.

Anyone else declined testing?? was it a mutual decisiosn between you and your dp/dh, what were the reactions of other people who may have known you were declinign the tests?

OP posts:

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FabIsGoingToBeFabIn2010 · 29/12/2009 19:05

DH and I weren't officially offered any tests but with ds2 we were asked why we hadn't had any. We didn't want anything invasive but were happy for him to tell us if there was anything obvious on the scan. There was but all we agreed to was more scans, no amnio and nothing invasive.

Your baby, your choice.

MunchMummy · 29/12/2009 19:07

With DD1 I declined the tests, but was bullied into it by my doctor and family. In the end I'm glad I did have them. Its not that we would have terminated if there was a problem, but knowing if there was would have given us time to prepare, practically and mentally.

Well done for sticking your guns though, its hard isn't it when everyone around you is putting the pressure on to get them done.

grumpypants · 29/12/2009 19:08

I declined testing and later on at my 24wk scan found myself referred to Kings and spent the last weeks up and down as a problem was identified through ultrasound. Every time the doctors seemed a bit surprised and a bit like 'what were the test results' and I couldn't say, obv. Maybe they could have found out more. As it was we had a very stressful last few weeks and we still kept the baby (the reason for not having tests was that we would not end a pregnancy (our choice not one that I would suggest/impose etc on anyone else). Next time, I think I wd probably have the tests!

heth1980 · 29/12/2009 19:09

I declined the tests and no one tried to persuade me otherwise.......my mw even told me that she didn't have them with any of her 3 kids either. It's absolutely your right to decline them......if you don't want them stand you rground and don't let them sway you X

MrsGravy · 29/12/2009 19:09

Hi! I missed the triple tests (that's the 16 week one for downs right?) with my last child as I'd moved area. Nobody seemed bothered.

This time around I talked to the midwife about it and she seemed of the opinion they weren't terribly accurate - and of course, even if you come back as low risk you could still have a downs baby. I decided not to have them. Midwives were absolutely fine with this - they checked I was certain of my decision but I certainly didn't feel judged.

NumptyMum · 29/12/2009 19:12

When I was pregnant with DS (at 36) we opted for a nuchal as it was non-invasive and we just wanted more certainty about the pregnancy - and had very low results (I think 1:20,000). but my hospital were always emphasising that we didn't have to have the tests. So don't fret that your age will stand against you, I think 36 is on the young side of the stats going up. On the other hand if you want to say 'no', the hospital should respect that.

sunburntats · 29/12/2009 19:19

OOh you are so very brave.
I ask for every test going probably due to my super high anxiety re all of my pregnancies.
I do think though that i have 20% anxiety and in my experience, the tests bring me another 80% of the anxiety. Scans being the biggest worrier of all.

I need to know though, i need answers and information.

For my next pregnancy (God willing) i aim to make every effort to be restarined and to hold back as much as i can fro the tests.

DH would rather i dont do the testing though.

Original poster

santabringmeababy · 29/12/2009 19:23

Thanks for all the messages!

the reason for not having the tests is that I dont know how/if I could deal with having a choice, as to whether or not to proceed with the pregnancy, if that makes sense.

I think there would be pressure to terminate, even from DP, and i don't think i would cope well with that.

I had the 20 week scan with ds because i wanted to be forewarned and give him the best chance if he was poorly in any way, and i would have this again for the same reason.

I know I wouldn't have the amnio etc as I am achronic severe worrier and if anything happenede I would blame myself, so in a way having the blood tests seems a bit pointless (if i come back as high risk, what am I going to do- just worry for the rest of thr pregnancy!!)

Its really helpful to hear of other peoples experiences though!

OP posts:

winnybella · 29/12/2009 19:30

I had a 12 week scan where they did the NT test (it's sort of automatic here in France), but I haven't done the triple blood test, as I knew I wouldn't terminate anyway by that stage.
Doctors were totally ok with that.
Congratulations!

LadyBiscuit · 29/12/2009 19:32

I decided not to do any of the 'disability' tests when pregnant with my DS. I was 42 and had decided that I would only terminate on conditions that were incompatible with life which would be picked up at the 20 week scan. Although I was questioned by the MWs I was very firm and they didn't probe further. My family were slightly dubious about my decision but I didn't even discuss it with anyone else (am a single parent)

GracieW · 29/12/2009 19:33

I didn't have the tests because it wouldn't have made a difference to what we did.

Simple.

Clary · 29/12/2009 19:35

When I was pg with DS2 I was 38 and my MW suggested I might want to have a nuchal scan (at the time you had to pay tho it's now free on NHS in my area).

I declined tho (not because of paying) for various reasons (basically it's not diagnostic so frankly tells you very little, nothing at all if you want certainty that the baby will not have Down's Syndrome).

I could also have had an amnio because of my age but again said no. We knew we wouldn't terminate for Down's or other issues spotted by amnio anyway so there wasn't much point. I think I did have the blood tests but even then I wondered why on earth.

HTH but as others say it's very much a choice for you and partner.

MumNWLondon · 29/12/2009 19:37

Its all your choice and don't let anyone tell you otherwise...but some tests eg some blood tests and aspects of 20 weeks scan are for your benefit rather than to see if there is a problem with the baby - eg low lying placenta.

I am 35 and quite nervous person and proceeded with the tests - got a 1:50,000 for the nuchal fold test, and nothing came up in the 20 week scan which put my mind at rest...

I saw as a child my parents deal with a very disabled sibling (I was 9) - the stress, the pressure on their relationship and the impact on me and my other siblings and personal view is that I would want to put my children through similar if i could help it.

But its your pregnancy and your choice and you have to do whats right for you.

TidyHollyBush · 29/12/2009 19:38

What GracieW said.

NancyDrewRocks · 29/12/2009 19:42

It's a very personal choice and one that you are absolutley entitled to make.

My perspective is slightly different as my DS2 died in utero due to downs. Prior to that I wouldn't necessarliy have terminated if I was pregnant with a baby with downs - honestly I have no idea what we'd have done but I do know now that with any subsequent pregnancies I might be lucky enough to have I couldn't take the risk of having another stillbirth and because my risk of Downs is high I will have a CVS.

jammietart · 29/12/2009 19:49

We declined nuchal fold measuring and triple test with both pregnancies. I actually had an argument with a locum GP regarding my refusal to have the nuchal. She felt it was important for me to know if they baby had a genetic condition so i could prepare family and friends ('they don't know whether to send cards and presents"!!!! wtf)
I would not go on to have further tests such as CVS or amnio which have risks and I wouldn't terminate a pregnancy. It was more my decision than DHs but he was fully supportive.

GracieW · 29/12/2009 19:50

Nancy my DD1 had Turners and died aged 4wks.

We have since gone on to have 3 more DC's and didn't have tests with any of them - termination wasn't a choice for us.

Agree it's very personal though.

skihorse · 29/12/2009 19:54

Santa Like so many others, I have no wish to know because:

i) Any test result will not influence our decision to have this baby.
ii) my mental health cannot tolerate me worrying myself sick for x months - we can deal with everything as and when.

TheDuckSaysMoo · 29/12/2009 19:55

I had the tests with DS (36) and they came back with a high reading - can't remember the stats now. I hadn't really contemplated getting a problematic result so it was a bit of a shock. I would never have chosen to terminate as a result of the tests or to have an invasive procedure for further tests so it was kind of pointless to have the tests in the first place.

The result left me completely stressed me out for the rest of the pregnancy however it also gave me some time to mentally prepare for the potential that my baby may have some problems. Thankfully I was worried about nothing.

TheDuckSaysMoo · 29/12/2009 19:56

I should have added I don't think I'll bother having the tests next time.

sherby · 29/12/2009 20:04

lots of people seem to jump up and down about not having the tests

its quite normal not to have them IME, most midwifes don't bat an eyelid

lowrib · 29/12/2009 20:08

I had a notch one of the arteries in the womb, which meant there was a reduced blood supply to my baby.

AFAIK they only found out about this as a result of the Downs blood test - it affected the blood result, and so although it was very worrying indeed when they thought it could be Downs, further testing (CVS the Doppler scan) showed up the correct diagnosis.

They then treated us and I had a lovely healthy DS a year ago.

If we hadn't been diagnosed then my DS would have potentially been deprived of oxygen in the womb.

So, for us, having the Downs text potentially saved my baby from oxygen deprivation.

If it was me, I'd definitely have the test.

EdgarAleNPie · 29/12/2009 20:17

i guess it depends on where you stand - i would terminate if there was going to be a problem so had all tests done every time- though due to not getting appointments until later it was at 16 weeks which is barts etc rather than 10 weeks for (more accurate)nuchal fold screening.

it is possible that you will worry either way - even if you have the test and it comes back clear, or if you refuse testing you'll wonder what the results would have been.

there are some things the testing picks up which can be treated (iron levels etc) and some abnormalities where preparation can make a real difference. you can pick and choose which tests you want.

i think it is fair to discuss this with your DP even though the final decision is very definitely yours.

my experience of having foetal abnormality diagnosed is that you are uner no pressure to terminate from the hospital - in fact their policy forbids raising it as a posibility. your family/ friends may be different...

NancyDrewRocks · 29/12/2009 20:24

gracieW That must have been heartbreaking and (IMO) you were very brave and incredibly strong to step into the unknown like that.

I am not that strong.

I know that my soul could not cope with pushing another dead baby into this world. It broke my heart. I think maybe it broke my other DC's hearts. I don't think I would get through it and so warped as I am sure it sounds to some I would have to try and ensure my family don't go through that again.

tackyChristmastreedelivery · 29/12/2009 20:28

Santa Actually loads and loads of women decline antenatal screening for Down's Syndrom so you are not unusual at all. It is much rarer for women to decline HIV, Hep B and syphilis. Sometimes women decline the 20 week anatomy scan, or just scan for placental site - as they would not act on any findings from the scan. So you make a choice that is right for you.
Be ready for your health provider to document in your notes that screening is declined. It is purely to provide evidence that you were given the choice.

Congratulations!

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