Has anyone refused to have routine tests in pregnancy?

[foreverastudent]

I refused blood tests as I didnt see them as being medically necessary. Had loads of hassle with the hospital about it though.

I did have ultrasounds because I felt that the benefits outweighed the potential risks but would be interested to hear from anyone who refused these?

Does anyone else worry about the possible long term consequences of routine ultrasounds? I know docs say they're safe but thay said that about thalidomide (sp?) and ultrasounds haven't been around long enough to know if there will be effects 50 years down the line.

In all truth II didn't worry in the elst about ultrasound scans. If you worry about every single thing through every day of your child's life you will rap9idly collapse.

I made the decision not o have diagnostic tests above scans and routine amternal bloods, based on the fact that any child I carry has a very high (up to 80% risk) of ASD which is undetectable anyway: plaus with ds3 we ahd high DS risk rate, he was clear then developed ASD so frankly anything above 100% is emaningless to us and we knew we would not have Amnio.

I did ahve quite a few bloods for iron etc as I came close to a transfusion. Plus the normal base screening- HIV, etc.

I also had an extra scan as iI had a HB and they offer a 38wk presentation scan here to do a double check.

The only advice I would offer anyone is: think through whatever choices you amke, recognise there is no such thing as an allclear as very few disabilities can be tested for, and amke your decisions from there.

'you can't do anything with the information? yes, you can, you can prepare yourself, physically and mentally, and you can take your time to do research and arrangements for whatever condition your baby may have

Having actually been in that position with a HR DS score I used to agree with you wholeheartedly but for me no longer do.

Instead of a ncie relaxed pregnancy with ds3, I has nothing but stress and worry; the NHS sent me a delightful elflet after refusing amnio called 'Your baby has DS'. My MW's called me repeatedly to urge me to make an appt: so much so that we did, purely from what certainly felt like bullying. When we got there we chatted to a lovely nurse counsellor who asked why on earth we were risking Amnio if there was no way we would terminate; when we explained we were told that she would delay the consultant's arrivcal and we should 'do as we thought best'- we ran. literally, right out that door.

As it ahppens a child with DS would probably be no more disabled than DS3's Sn anyway. And we did request a special high res scan to double check for heart issues so felt reasonably safe on that basis.

I would never advise anyone not ot have tests but I would say that 'prepare yourself' is not always as easy once you are immersed in the system. I wonder what I would ahve done had ds3's sn been diagnosable: I hope I would ahve had the strength to keep true to my convictions becuase he is a joy, but if I was almost talkwed into amnio I didn't want then who knows?

clarissimo, i wouldn't have an amnio if i wouldn't terminate either, and you should not being bullied that way, i would have complaint to the trust, your midwife is there to support you, not to scare you, but you can still prepare into what having a child with ds involves, even if not sure yours has it, i know people with ds children too, and there is lots you can do to help, e.g, parents support groups,...

Thre is a lot you can do absolutely, but IME the preparing made me more stressed. However I should emphsise that I already ahd one child with ASD and had spent time working in a LD environment so perjhaps I knew enough and the preparing just focused me on potential worries when I already ahd the knowledge anyway IYSWIM.

The thing that is sometimes forgotten is that many conditions that are detectable by scan/bloods can often end in miscarriage anyway.

I always said I wouldn't terminate if a condition such as Down's Syndrome was detected, but what I didn't know (before it happened to me) was that the majority of Down's syndrome fetuses are not sufficiently viable to survive to birth - approximately 15% make it to term and of those, a small proportion survive the birth process and grow into health adults. A miscarriage risk of 85% is very high and, for me, was well worth knowing about. Without the nuchal scan and blood test I would never have known and could not have prepared myself for what was to come.

In our situation there were also further complications which the scan and CVS revealed - cystic hygroma and fetal hydrops. We were told that no fetuses had ever survived with such a level of abnormality. This conclusive evidence gave us the information we needed to know how to proceed. Awful. But I am grateful for that the testing was available to us.

also important to remember, an amniocentesis is not routine, the blood test and scan are, and after that you make an informed decision

i think people are missin the point... this thread was about routine blood tests initially. now i feel by bumpin this thread i've caused a debate

Is it the routine full blood count that checks for rubella immunity? Everyone seemed to know I was immune, so I assumed it was from that.

they use some of the same blood samples to check for different things... its not picked up in a fbc test..... they look for the antibody for rubella

I refused Amnio and decided on a good but not as good as alternative where a skilled can do nuchal testing totally non invasive using regular scan technique.

I also refused screening tests as we'd decided to keep DD regardless. Obviously if something came up on the ultrasound we would have chatted about that, but everything seemed okay and we were low risk.

crazycatlady said "When you've been on the wrong side of statistics you realise how valuable these tests can be."

i cannot echo that enough, having also been that unlucky person, whose unborn child had a condition affecting less than one in a million, yes, million, pregnancies. so rare they can only guess at the statistics, and even the specialist we went to see in London had NEVER seen a case in the UK herself!!

and for all those who say "we would never terminate", well, I guess not having the tests gets you out of the possibility of having to make that decision. you might be one of the many who miscarry and never know what terrible decision making you have been saved from,not that i am saying mc is easier.

there were some conditions we had discussed and would not have terminated because of, and then there was the unlucky hand we got dealt (as 2 virtualy tee total non smokers, bothe fit anf healthy and under 30)- so we made the decision to terminate, the best decision for our baby and our existing children

there is not a day goes by that i do not think about my other daughter, stillborn at 20 weeks, and i thank God for the testing we were offered in my subsequent pg to reassure us that all was well this time

oh and about this "low risk" business - its all about averages, just because you tick all the boxes does not mean you wont be the unlucky one who bucks the trend, sadly.

just cos some smokers who eat crap all day manage to have full term healthy weight healthy babies, does not mean the risks are not there in subsequent pgs

there are no garuntees! how many of you do the lottery hoping that the 1 in 14 million WILL be you?? yet assume for anything bad, it WONT be you?

Why would someone not having tests assume the bad thing won't happen? I never did- life taught me how stupid a bet that is; I just knew I would cope if the outcomes were different than hoped for.

I have gone to post on this thread many times but know my post will be very emotionally charged as a result of my personal experience.
crazycat I think i have a very similar view to you and I am very sorry for your loss.
babieseverywhere suggested only those women who need to be tested, undergo the tests- BUT, how do you detect those women? They don't wear a sign saying 'test me' do they?
The whole point of a population screening programme, in this case, pregnant women, is to use the battery of routine tests to detect conditions which are not obvious to the eye, and many of whom can be treated eg RH+/- etc.
Despite being fit/healthy/young(ish), in my first pregnancy, the routine bloods revealed a high risk pregnancy,which sadly ended in the birth and death of my son at 20weeks. Fortunately, the knowledge gained from those tests, has allowed me to go onto have a healthy baby.
I know my experience clouds my judgement on this but for those of you who have refused routine testing, I am very glad that you have gone on to have good outcomes with your pregnancies. I guess I don't understand (and really trying not to be judgy about it) why you wouldn't have routine blood tests? Sure, maybe not nuchal/cvs etc but why refuse routine bloods?

PeedOff I am sorry for your loss

'and for all those who say "we would never terminate", well, I guess not having the tests gets you out of the possibility of having to make that decision. you might be one of the many who miscarry and never know what terrible decision making you have been saved from,not that i am saying mc is easier

I have no issue with people that choose to terminate, we just knew it wasn't for us. As an individual I decided I would rather carry a baby to term and have it die at birth than terminate. I do consider myself very lucky that I never had to make the choice but can assure you I do know of the a;lternatives- my Mum had 4 stillbirths then had a termination beciause of rubella damage incompatible with life. Making a choice does not imply that ohter people's are not right or of less value, just that it is not the option for you.

Whilst I consider myself extrremely lucky to have my chidlren alive, and healthy twi have been diagnosed with autistic spectrum disorder and either DH or I will be a carer throughout our lives, and I know that is not easy. it's also a non testable disorder. being in thatb posotion we did not feel we could pass a message to our children that ds4 9the one we had the least etsts for) was not wanted if he was disabled, and hiding the pregnancy until we got an all clear was not feasible either as I had hyperemesis in all my pregnancies. Rather, we kbew that ds4 had a high asd risk but that it could be anything from dyspraxic to very severely aytistic with multople comorbids. So far (with the caveat that ds3 regressed) we seem to have lucked out a bit as ds4 is developing in an nt way but maybe we jusy had a different expectation set from the start?

I hate these threads, I always get sucked in then end up writing numerous posts and deleting before hitting 'post'.

There shouldn't be a debate; women have choices and they can accept tests or decline them - only they can know what is right and there is no need for anyone else to understand someone's choice.

I had a full STI check before TTC. I would continue my pregnancy no matter what the result of any test/scan so I choose not to have any.

DS3 had a condition which could have been picked up at an anomoly scan at 20wks. His condition was incompatible with life... He was stillborn at home at 28wks. Although that was a shocking and upsetting experience, I think knowing for 8 weeks that he was going to die and just waiting for it would have been a million times worse.

To those who have said that you've declined screening tests but had scans - you do realise that a scan is a form of screening test - they are looking for anomolies! That is why it is always so sad to see posts from people who have just had bad news at a scan and now have to make a decision as to whether to have amnio/cvs etc - they haven't thought about it before the scan as it's thought of as just a nice time to see the baby and check the gender!

As I say though, it is just a choice and only you know what you would do with any results and how you would deal with them.

As having tests just because someone in a third world country can't is just ridiculous - irrelevant to any decision here. That would be like saying we should all formula feed our children because we formula isn't easily available in third world!!

I refused the test for the % probability of Downs Syndrome as I would have had no intention of having an amnio.

I have skim read this thread, but had I NOT had the 20 week ultrasound, then my gorgeous DS1 might not be here as the "problem" that was diagnoised it a silent killer. We wouldn't have know he had it until it affected his specific body part. By then it could have been too late.

Thankfully, we live in a Country where we have the choice and we were able to scan regularily to monitor the situation. This lead to several medical interventions which more than likely saved DS's life. Had this been 30 years ago, or we had selected NOT to scan, it is quite likely he wouldn't have survived.

i refused the nuchal fold test with my second baby. i had it with my first (without really understanding the implications of the results, i think) we were told we had a 1 in 47 risk of a Downs baby, (which i would never have aborted anyway) when we tried through the tears of worry to be a bit upbeat about it - pointing out that if you bet on a horse that was 47 to 1 that it would never win etc - we were urged to be SERIOUSLY worried about it. it was an awful experience and a fairly stressfull pregnancy esp having to deal with grandmas-to-be freaking out about it. my son was born 100% healthy with no problems at all.
the biggest shame was that after feeling a bit weird to start with about the pregnancy (well a bit cross actually!!) as it was a surprise and we had some big plans on the go, at my first scan i fell straight in love with this amazing dancing baby i saw, and i felt such joy and that feeling was really spoilt by the doctors obsession with totally freaking us out about it all. my second son was perfectly fine too so i am a lucky mummy to have two handsome healthy boys - amazing when you think of all the things that could go wrong..
i guess its good to be forewarned if things arent as you expect, but if youre not going to abort then why worry yourself? its a hard one, my step mum even refused the scans i think.

me again.. now i think about it more, i remember finding out that if you look into it enough, we found that all the statistics turn out to be a load of chuff, they all contradict each other so are basically meaningless anyway, i was shocked to discover that the rates of miscarriage after amnio (which i would never have had) are different with each hospital because its about the skill of the person doing it, which i found a bit horrifying.

also i know a senior physiotherapist who dealt with disabled children and in her experience it was generally the parents who were told they had no risk at all of having Downs babies were the ones that had them, and the parents told they had a huge risk that often had babies that were fine..

go figure, huh?

pixie What problem did he have?

Asuwere: but nobody said that people should have tests because others in 3rd world countries cannot. What has been argued is that we have lots of examples of what happens to babies/mothers from countries where these tests are not available (as well as good antenatal care not available).

Yes most women have perfectly healthy pregnancies & could potentially have these healthy pregnancies & healthy babies without medical care. However, it's also perfectly 'natural'- I mean 'natural' as something that that exists in nature, not as something with any positive or negative value- for other pregnant ladies to have unhealthy pregnancies & ill babies. Also perfectly natural for women to die in labour & pregnancy & for babies to die in labour. Should we leave everything to nature then? Especially when in some cases a blood test or a scan could make such a difference? Yes of course doctors aren't infallible and tests/scans are also not infallible. But so what, nothing's infallible in life, those tests still do a damn good job of preventing & treating a whole lot of problems.

renal - condition was posterior uretheral valves which implicated the development of his kidneys. Only affects boys....

with ds1 i had the standard triple test and dating and anomaly scan, he then suffered intrauterine growth restriction, was a small baby and blue when he came out as my placenta had just about packed up, i was only induced early due to severe pre eclampsia (so if i hadnt been induced when i was i wonder if he would have made it to full term) due to this i had extra growth scans with ds2 (alond with triple test) and when his growth also dropped off the centiles i was induced early, (i had pre eclampsia again) he was smaller than ds1. if i hadnt had the scans he may have died before delivery.

I am now a sonographer and watch a lot of people come through for their scans who dont want the combined screening as they wouldnt do anything about the results. they still want their dating scan which is fair enough, to know your dates. But now we have to gain consent for the anomaly scan and inform them that the scan is to look for structural problems, they don't like being informed of this, to them it a special outing to look at the baby and dont realise the significance of the scan. we had a patient (who was also a nurse) who asked that if we saw something wrong, then not to tell her, but that is not what the scan is for. Its a medical screening test. If people want an bonding scan they can go pay for a 4dscan ;which is not recommended by both the british and american ultrasound society, due to the unknown effects of ultrasound on the fetus, as yet. this is why ultrasounds scans should be kept to a minimum for a medical reason. 4d scans use a higher power level than a standard scan, the effects of which are unknown.
The has been an unproven theory that people who had more ultrasounds as a fetus are more likely to become left handed. (due to the possible heating effect caused by ultrasound, which is why there are standard time limits for scanning over areas of the fetus) as i said, this hasnt been proven as yet, but in my experience, my ds1 is right handed and had 2 scans my ds2 is left handed and had 5 scans, which is why when i read the theory it was of interest to me.
I do think having ultrasounds is more beneficial than not, it gives families and mecial teams to prepare for the arrival if anything special is needed at the time of birth. I would have them again if needed.