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Anyone had the blood tests and asked NOT to be told downs risk?

(17 Posts)
Armadale Mon 27-Jan-14 11:48:18

Would appreciate any advice on this, it was a suggestion made by my hospital today that hadn't occurred to me so I'm just trying to think through the ramifications.

I do not want the nuchal fold test.

(I appreciate others might have differing views to me, and I'm not in the business of trying to impose my views, I think everyone needs to make their own choice in their own circumstances.)

But for me, I don't want the it done because I know you only get a risk ratio, not a certainty. I would not have a cvs due to risk of MC, (& harmony is not an option) so I would not get a definitive answer and would be wondering all pregnancy and have a high level of anxiety about it.

It is my sixth pregnancy after 5 MC so I do need to try and reduce things I'm fretting about.

I also would never abort for downs in any circumstances due to my beliefs, so really I don't think I would gain anything by being given a ratio- I wouldn't act on it so really why do I need it?

I rang the hospital to check they were OK with doing the scan without the nuchal and they suggested having the blood tests anyway and then asking not to be given the downs ratio.

Their thinking is as follows.

My first pregnancy ended at five months due to placental failure. I did not deliver the placenta after labour so had to go to theatre for an erpc and unfortunately the placenta was lost confused in theatre and so was not available for the post mortem. This means that they can not be sure what the cause of the placental failure was, or the risk of it happening in a subsequent pregnancy, but it is obviously something they are concerned about.

One of the two blood tests, PAPP-a, can give a low result if the placenta is not working well, and a low result might results in extra scans that could pick up a problem, and possibly lead to an early delivery if necessary.

This made a lot of sense to me because it is a test that is actually looking to do something preventative if that makes sense, and I came away from the phone call feeling this was a good solution.

However, I have since done some reading and have found that a low PAPP-a result is also a key marker for downs, and if I get a low result, (and a high HCG on the other blood test) it will suggest a high risk of downs.

I didn't realise this from the phone call and am now swinging towards refusing the blood tests as well as the fold measurement, but am concerned this might mean less growth scans.

Sorry this is such an essay, it is something I'm very concerned about. Any advice would be very welcome.

AwfulMaureen Mon 27-Jan-14 14:44:04

I think you should get the results just because of your elevated risks of other problems. Ignore the Down's risks...I'm like you and didn't want any results as it would not have affected my descision to have the baby...but given your info on the placenta...I do think you need to get it all done.

TheXxed Mon 27-Jan-14 14:46:30

At my 12 week scan I made it very clear I didn't want to know my downs risk. They told me anyway.

ToddleWaddle Mon 27-Jan-14 14:59:04

I did want nuchal test for dd2. However she was not playing ball do booked in for bloods 15/16 weeks. All was normal despite being late 30's.
I don't like surprises and wanted to know what was in store. I have no idea what I would have done if results were not good.

Armadale Mon 27-Jan-14 16:16:43

Oh thanks for the replies, everyone.

Maureen, I agree it would be helpful to have the placenta info.

Xxted, yes I have heard this before. Can I ask were you high risk when they told you??

Apparently they have a legal obligation to tell you if they feel anything is wrong and so they can just ignore what you've said about not wanting to know, which is what makes me reluctant to take the blood tests in the first place.

I think I need to ring up again and have another chat so I'm clearer on what allowing the blood tests actually means

CrispyFB Mon 27-Jan-14 16:24:20

I'm so sorry to hear of all your losses, especially with one at five months thanks

It is a good idea to do the bloodwork in order to gauge a possible placenta problem. I've had extra growth scans due to low PAPP-A and a second time for high bHCG myself, and I know a lady in real life who had IUGR following a very low PAPP-A which was only picked up on a growth scan.

In case you weren't already aware, the nuchal fold measurement is not just for spotting chromosomal issues - a thickened nuchal fold can also indicate potential heart issues too. So knowing the thickness means you would get a fetal echo at 20 weeks if appropriate to spot potential issues.

Any reason (aside from cost, I know it isn't cheap - cheapest is £400 at the FMC in London) Harmony is not an option? It's becoming more and more widely available including a few NHS hospitals now.

Much depends on how "personal" your medical care providers are willing to be. A decent one would quite happily probably only relay information about those parameters if they were abnormal, and withhold the risk ratio results from you. But that is probably asking a bit much for most medical people unfortunately and chances are good you'd end up with the information whether you wanted it or not. Worth asking your midwife though all the same, you never know, they may be able to do it.

TheXxed Mon 27-Jan-14 16:51:35

No I was low risk.

Armadale Mon 27-Jan-14 17:07:05

XXed, that is ridiculous, I'm v glad you were low risk but it is ridiculous they just overrode your wishes like that

Crispy thanks for the very detailed and thoughtful reply. Harmony not advised as I conceived 10 days after last MC therefore there is a lack of certainty that they will be picking up the correct pregnancy in the analysis.

I do realise the tests can detect heart defects, but was under the impression that a 20 week scan would also probably pick up significant probs.

It is very interesting to hear about your friend who got a low score and the growth scan did pick up a problem- this is my fear, really, what if I don't have it and there was a problem they could have picked up? I would find that very hard to live with.

On the other hand, in my OP I was careful how I worded things as my intention was not to cause any offence to anyone, but I do feel the downs screening is wrong and the fact that 95% of babies with it are then terminated is something that I feel quite strongly about and I don't want to have anything to do, and having the blood tests in a way is doing so.

I don't have a booking in appointment until after my scan, unfortunately, (which is my fault as I refused to refer until I'd got to ten weeks as I didn't want to go through cancelling another one if I MC again, so I appreciate it is hard for the hospital to fit me in with only 2 weeks notice) so I can't discuss with my midwife. Also I had a bad time with them in my late loss (they lied about various things to cover themselves) so I don't really trust them either, which doesn't help.

I'm wondering if I rang the hospital maybe it would be possible to make an appointment to go in and see the lady I spoke to at the screening unit, she was v helpful on the phone.

Thanks for helping me with my musings, I realise I'm not really coming to any conclusions but really helps to think it through.

CrispyFB Mon 27-Jan-14 18:42:40

Ah yes, I see the issue. I've heard that too - that there is a chance of contamination unless it was crazy early. How annoying!!

The 20 week scan will pick up a lot of things with the heart. However I do wonder if it will pick up a need to look further. I went to the FMC for my 12 week scan and I had a borderline nuchal, so they suggested a cardiac scan. They knew I was already doing my anatomy scan with them, so I guess they must have their reasons? i.e. that perhaps there are some cardiac defects that could show up with a thickened nuchal as a symptom at 12 weeks but not with a regular anatomy scan at 20 weeks. I have no idea though short of having an appointment with an expert somehow/somewhere where you could confirm that or not! The FMC is world-leading with its research so it must have a reason for the recommendation over and above the regular anatomy scan.

I had a quick search myself to see if I could see anything but no luck - I did find this article though which looks to be quite interesting! (heh, surprise surprise the professor who runs the FMC is one of the authors.. I swear he has more research papers than I've had hot dinners!)

There is nothing stopping you from going for a private growth scan just in case if the NHS won't provide one. With my previous two pregnancies I had cervical issues and the NHS permitted a few cervical length checks, but for my own sanity I needed more than one a month so I had private ones in between. An option to consider maybe? So if you're going to be scanned anyway you'd have little to gain from knowing the blood test results.

Bear in mind that over 50% of babies with Down Syndrome show signs on ultrasound at 20 weeks.. so if something shows up then you may find yourself worrying anyway. So there's never a guarantee you can get through the whole pregnancy anxiety-free unless you declined all scans. And I wouldn't recommend that - too many cases, including my DC2 (incompetent cervix spotted at my anatomy scan) where lives were saved as a direct result of that scan.

For what it's worth, there was no Harmony with DC3 and I didn't want invasive testing when I got a 1 in 34 for T21, so we waited it out until I could have a "safe" late amnio at 32 weeks when the 1% risk just becomes a risk of preterm labour. We weren't going to terminate for non-fatal issues - the late amnio was just so we could be prepared just in case - we weren't prepared to risk his life for 1 in 34. It's such a personal and potentially controversial decision/issue though with so many different factors unique to every couple.

It was a horrendous wait over 20 weeks and I can COMPLETELY understand you not wanting any part of that!! I went a bit mad and obsessive and learned far more than any normal person would about first trimester screening as a result! If it wasn't for Harmony I don't know what I would have done this time round.. especially as I did screen at 1 in 5 (Harmony is negative)

Might be an idea to see if you can get an appointment with the lady in the screening unit. I'm sorry you had such an awful time with the hospital.. once the trust is gone it is impossible to get back.

Good luck with your decisions!

grobagsforever Mon 27-Jan-14 19:48:07

Ii screened high risk for downs due to low pappa a and high hgc. I was 1/15 but have since had the all clear. I will be monitored for growth due to low pappa a and am on baby asprin as a precaution. So I'm glad I had the test and will be monitored. I would suggest having the test, ask not to be given risk ratio and just ask for confirmation that your pappa a is ok. Good luck!

Yaya70 Mon 27-Jan-14 21:42:22

Perhaps you could just get the PAPP-a result so you know whether there might be potential growth issues, but ask not to be told the HCG result either? It's the combination of the results of the nuchal plus PAPP-a, plus HCG, plus other soft markers that generates the risk score for the various trisomies. The blood markers are not that sensitive, so a low PAPP-a result in isolation (if that were the case) wouldn't really mean anything.

Best of luck with your pregnancy.

TheXxed Mon 27-Jan-14 22:02:29

Doctors can be quite paternalistic and ignore your wishes, be prepared.

I am wishing you all the luck in the world with this pregnancy. thanks

MrsT2007 Wed 29-Jan-14 16:06:00

I believe the blood scored can be linked with placental abnormalities. If you've had these issues in the past, I'd be tempted to get results for them (if not the nuchal scan) to prevent any possible risk of late mc or growth problems.

sleepyhead Wed 29-Jan-14 16:16:47

sad for your losses. Pregnancy is clearly going to be an anxious time for you anyway and it's important that this is minimised as much as possible.

I got a high risk result with the bloods (1 in 23) and chose amnio because I knew I'd be to anxious just to wait for confirmation one way or the other at birth. Dh & I had already agreed that we would not terminate if DS was diagnosed. Yes, I did feel horribly guilty that I was risking my baby's life unneccessarily, but I felt confident in the medical team carrying out the amnio, and also felt (for me) that 1:100+ mc risk was manageable. I wouldn't even have considered the amnio if I'd got odds that good for DS. But clearly 1:100 will be far too high for you.

I think you need to see someone to talk through your options. The risk ratio is based on a calculation taking into account your age as well as the blood results. I can't see why this calculation could just not be done in your case, but the discrete readings be used for any other purpose, eg to see whether extra scans might be of value.

Elderberri Wed 29-Jan-14 16:29:29

With my second I had no tests done except iron.

I refused them all. I know I am rubella immune, as I had it as a child.

After 4 m/c, an ectopic, And over half a decade ttc, I was not going terminate whatever.

Armadale Sat 01-Feb-14 14:48:56

Just an update....

In the end I went with Yaya's advice. I asked for just the papp-a bloods to be done, not the HCG. I really didn't want anything done that didn't have a positive purpose for the baby, and I also thought this gave me the information without risking them doing more than I wanted on the quiet.

They were OK about it, realised pretty quickly what my reasoning was and sorted it out, so I was grateful for that.

At the scan the baby was face down, spine towards us for the whole scan so they couldn't have done the nuchal reading even if I had wanted it!

Elderberri, that is how I feel really, I'm keeping any baby with me, so sorry for the troubles you went through.

Crispy, that article you linked to was really helpful, thanks for all your advice.

AngryBeaver Thu 20-Feb-14 03:28:06

With my first 3 pregnancies I asked not to know the results of the nuchal, as we decided it wouldn't matter.
We lost our fourth (mmc) at 14 weeks.

We emigrated and I became pregnant with our 5th, I asked not to know (as usual) but they told us anyway.
This changed everything, even though we always thought it wouldn't.
With every scan there were more and more complications and heartbreak.
We decided that it would be best for our beloved baby to end the pregnancy.

I lost the subsequent baby.

I am now 31 weeks pregnant. It has been an incredibly stressful time.
The baby is smaller than any other pregnancies so far and I have been given a scan form, so I can go whenever I want.
I don't think I will.

At this point, there is no option but to continue with the pregnancy and hope for the best outcome.

I'm so sorry for all you've been through and don't know if what I have written helps you at all, but thought I'd share. Xxx

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