Nuchal scan against will

(32 Posts)
user1466605130 Thu 04-Aug-16 23:53:21

Just wondering if anyone has a view on this and AIBU...

DP and I gave some serious thought and discussion as to whether to have screening for Downs syndrome and for our own reasons decided that it wasn't right for us.

I had my dating scan recently and was asked if I wanted it. I said no - I had decided to decline. The doctor who did the scan said this was fine and accepted our decision.

Whilst there I agreed to have blood taken as part of a research study the hospital are doing looking for possible early indicators of pre eclampsia. On my way to have the bloods the doctor explicitly said, "the bloods are for the research, not the Down's syndrome screening."

Imagine my surprise when today I got home from work with the results of my Nuchal scan including NT measurement and blood markers in the post.

The result has come back as low risk and I am grateful for that but furious as I didn't want this test in the first place and consider it very troubling that this was carried out when I expressly said and it was perfectly understood that I was declining it.

Not sure what to do next but I am very cross. Has anyone been in a similar situation?

R

Shallishanti Thu 04-Aug-16 23:57:46

that is very bad, you are right to be cross
I would complain to the university doing the research. Or ask to speak to a supervisor of midwives.

AppleMagic Fri 05-Aug-16 00:01:37

It sounds like someone has fucked up. I've read here before that the sonographer has to check the nuchal side regardless as part of the scan as it doesn't just occur with trisonomies but the bloods shouldn't have been taken and the risk level shouldn't have been calculated.

AppleMagic Fri 05-Aug-16 00:01:54

Size not side

Summerwood1 Sat 06-Aug-16 12:49:47

Just be great full that all is well.

DangerQuakeRhinoSnake Sat 06-Aug-16 12:54:21

I'd be fuming OP. Put in a strong complaint.

Floggingmolly Sat 06-Aug-16 12:59:01

Nothing to fume about. It doesn't matter.

pinkieandperkie Sat 06-Aug-16 13:02:39

I don't see the point in being upset and cross, focus on the fact that all is well.

DangerQuakeRhinoSnake Sat 06-Aug-16 13:19:37

It matters because the OP and her partner opted out of the test. It doesn't matter why, but presumably it was to avoid worrying about things had the result been different. Avoiding worry in pregnancy is pretty important!

alltouchedout Sat 06-Aug-16 13:25:19

Of course it matters. OP said no to something and was ignored. Why is it that so many people take the position that pregnant women don't get a say in what happens to them?

Floggingmolly Sat 06-Aug-16 13:25:19

But she has no reason to worry. She didn't realise the test had been done until she saw the low risk result; it's now official that she's no need to worry.
Fgs let it go and concentrate on bigger things

bekindtome Sat 06-Aug-16 13:36:09

I opted out for dc3 as I'd gone though so many losses I would not risk an amino so didn't what to know the results. I would have been very upset if my wishes wasn't listened to. With my other dc's I had the test, dc1 was low risk. With dc2 my results got lost and my midwife had to find them at 30+ weeks he was also low risk.

Scarydinosaurs Sat 06-Aug-16 13:43:04

It sounds like a mix up at the blood lab.

It doesn't sound like anything other than human error- I wonder if the screening trial you took part in are now wondering where your blood is for their test? Or if they used the same sample twice?

Either way, it's a shame, but I wouldn't be angry about it.

DangerQuakeRhinoSnake Sat 06-Aug-16 13:59:09

Flogging, and what would you be saying if the result had been different? The point is, it could have been.

Some people are unbelievable angry

Surf25 Sat 06-Aug-16 15:00:10

Did you get a participant information sheet about the research and sign a consent form? It's easy for other people to say you shouldn't be bothered, but in actual fact it is not good at all. Which of us would like to think we are consenting to one research test and inadvertently have our sample used for something else?

This research should have passed an ethics committee before being started and they should have ensured safeguards against such mistakes. Obviously we all know that human error is a part of life and that may be the explanation, but it is actually imperative on the researchers that they can evidence they are doing everything possible to minimise this.
If you did have an information sheet you should contact the name/number on it. If you don't you could either contact the unit directly where you had the scan and ask them to redirect you to the doctors/research department.

user1466605130 Sun 07-Aug-16 14:13:17

Thanks for the replies.

We opted out for several reasons...

5% women get a so called "high risk" result. Of these the vast majority will not have Down's syndrome but will be offered amniocentesis and with it, a small risk (.5-1%) of miscarriage. I would not take that risk and consequently in the event of a "high risk" result would have spent the rest of the pregnancy worrying needlessly.

I also wouldn't terminate a pregnancy over Down's syndrome so why bother with the tests. Moreover, on a personal ethical level (and without judging anyone else's decision), I'm not comfortable with a screening programme which seems to screen out babies with Downs on a mass scale.

So I opted to avoid needless worry and due to my own personal ethical objections to screening for Downs in general.

However, my reasons are irrelevant - I opted out and make this decision clear. In law, performing medical exams or treatment without consent is assault (except in very specific circumstances and this was definitely not one of them).

It has left a sour taste in my mouth and I am really not looking forward to future scans or ante natal appointments if my wishes can be so casually disregarded or if organisational issues mean such a mistake could so easily be made.

I spoke to the head sonographer and was informed that neither the Nuchal translucency measurement nor the bloods should have been done so in my mind, it looks like an individual doctor has decided to override my expressed wishes although the head sonographer said she though it was more likely due to "organisational inefficiency".

I am in the process of making a complaint. I hadn't thought about the research ethics committee but I will request contact details and pursue that angle too as this happened in the course of my participation in a research project.

I feel quite sad that my experience of ante natal care has been soured and I am really not looking forward to my next scan. I feel a bit bad about that too as I think I should just be glad that so far I am having a healthy pregnancy and all is well with baby and me but I'm anxious about going back to this hospital as feel untrusting towards the staff and the system.

R

Newmanwannabe Sun 07-Aug-16 14:31:02

The nuchal fold is a standard measurement on the scan. Could the bloods that go with it also be part of the eclampsia study <<clutching straws>>?

And then maybe someone has run them through the program without realising you didn't want the ratio? You'd think though they'd have two forms and your study bloods be labeled as the study and be run separately and if FTS required then additional bloods be taken and the test run twice.

Not that that's acceptable of course I'd be really mad too. Hope you get an answer how this happened.

Scarydinosaurs Sun 07-Aug-16 15:12:02

They measure the Nuchal fold regardless, it is just the blood test that you opt for. Even if you have made the decision to not know the results, it's very important that the doctors are prepared at the birth of your child for any problems to ensure the best chance for survival, if (God forbid) something was wrong, early intervention is the best thing for your baby.

By complaining you could be jeopardising the future of the study- obviously it's your choice, but not one I would make.

DangerQuakeRhinoSnake Sun 07-Aug-16 17:18:11

I had the exact same reasons as you for refusing the test OP. Not that the reasons should matter as you say.

A complaint won't jeopardise the study Scary, but it is important they carry it out securely and OP needs to let them know there has been a problem with their processes.

OP just to warn you at the 20 week scan there will be lots of measurements taken which you probably won't even know they're doing (and you don't get asked for consent) as we found out when they took me aside to say there was a possible problem with my baby's brain and it might be chromosomal shock then 5 days of major worry until a consultant had another look and told me it had been measured at the wrong angle and was actually fine.

I know they have to do certain tests but the worry they can cause must not be underestimated. To have forced an optional one on someone who refused it is really unforgivable imo.

Shallishanti Sun 07-Aug-16 17:53:31

OP, you know you don't have to have any further scans, don't you?
I really would speak to a supervisor of midwives especially if you now feel you lack confidence in the rest of your maternity care. Speak to the ethics committee as well- I am sure they intended full consent should be obtained from everyone (it would not have been approved otherwise) and what has happened here is that the hospital has not adhered to the protocols of the research, probably more through human error than anything else but the reason doesn't matter- the fact is they carried out a procedure without your consent. It's probably assault technically.
Antenatal testing is NOT OBLIGATORY and deserves serious thought - it pisses me off no end that people are so cavalier about it and are basically saying 'calm down dear'. You don't have to explain yourself or give reasons to anyone. You can just say 'no thanks'.
Please enjoy the rest of your pregnancy.

Scarydinosaurs Sun 07-Aug-16 18:10:53

I genuinely cannot fathom why someone would jeopardise their child's survival at birth by not equipping themselves with all possible information so that doctors and surgeons can react accordingly. But that is an entirely different thread.

I would imagine if the blood sample has been used incorrectly, the study would come under question? I wouldn't want to do that for something that was clearly human error. It isn't as if someone has tested you out of spite or a wish to harm you, it was human error.

Suzanne7934 Sun 07-Aug-16 18:23:28

I too received a phone call from midwife last Monday informing us that due to blood test and Nt scan and my age 36 we have a 1-5 chance our baby will be affected by Down's syndrome the news came as a shock the scan showed no abnormalities except the high NT, my Hcg 4.02 papp-A 0.58 and NT 3.4, we opted for the harmony test on Tuesday then changed our minds and had the Cvs on Thursday, I was also told that my thyroid levels were out, I suffer from hypothyroidism normally and my bloods sit at around 2 which is good but was told they were way out at 10.4, then told this wouldn't affected my Hcg levels, such a whirlwind of information our world seems to have just stopped with the waiting, we will continue with the pregnancy regardless as we tried for this baby for a long time we will love it just the same, but it is so worrying not knowing what is coming next, we were told the cvs results would be in Friday but were then told the sample wasn't big enough and the sample need to be left to grow over the weekend and we should know by 4.30pm Monday, I thought I would post 1. to offer support to others going through the same and 2 to ask if anyone has also went through something similar I am 14 weeks today, thanks for reading

Scarydinosaurs Sun 07-Aug-16 18:28:51

suzanne try posting in ante natal tests- lots of helpful and knowledgable people there flowers

Shallishanti Sun 07-Aug-16 18:54:41

Scary, please don't imply that people declining antenatal tests are jeapordising their child. If you are having your baby in hospital, the team will be prepared for whatever happens.

Scarydinosaurs Sun 07-Aug-16 19:14:45

But people don't, and it isn't just hospitals where people have their babies. Homebirths and midwife led units where there is only a hospital an ambulance ride away is not going to have a medical team ready. And there is a world of difference between a baby being born, awaiting diagnosis and then a plan being made, to a medical team performing planned surgery and procedures.

To decline ALL scans and tests would only put the baby at a disadvantage if they were to need medical intervention.

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