Losing my mind waiting for CVS results (panorama low risk, combined screening very high)

[nervousFTM]

Sorry this is long.

I thought I was worried about having CVS but it is nothing compared to the wait for results :(

Long story short - at 9+5 I had Panorama done privately and the results were brilliant they said - everything very low risk. Then at 11+5 I had my blood taken for the combined screening tests offered on the NHS (I am in UK). Dating scan was a week later and all looked perfect, until they combined my blood work results (free beta HCG is 3.11 MoM and PAPP-A is 0.38 MoM) and gave me a high risk of 1 in 19 - taking into account my age of 38 (ftm) 😢

At that appointment they told me to have the Panorama and rather go by that result - I didn’t tell them I’d already done the test privately as I felt I’d have more comfort from multiple screenings giving me a low risk result. Clearly this hasn’t gone according to plan ☹️

Despite the happy result from private Panorama test, I can’t stop focusing on the extremely high risk of 1:19 that they gave me for the combined tests. I had CVS done yesterday and will get the results in the next 2/3 days but this waiting is making me crazy.

Anyone had a false positive from combined screening - or know anyone who has? Going totally mad here and already feel heartbroken. I posted a response on a recent similar thread but guess I am just unashamedly looking for more answers! x

The result that you are going to get from your CVS is already decided.

I've had cvs's in all three of my pregnancies that got to 11 weeks and some had to be repeated and one went to amnio. The waiting is hell on Earth.

Use this time to get as much info as possible about the consequences of carrying on with the pregnancy or terminating, if you haven't already decided.

Speak to people who have done both, online forums are great.

Prepare for the worst, hope for the best.

Why on earth didn't you tell them about the Panorama? In case others read this and think about doing the same, the error rate for the Panorama is well under 1 in 100, it is far more accurate than the combined test. The CVS on the other hand comes with a risk of miscarriage - the professional advice of the treating team would absolutely have changed if they had the full picture.

However, I do understand how alarming this time can be and that we can all make crazy decisions under stress. The combined test is designed to have a high false positive rate (ie show someone up as very high risk when they are not), because the point is to flag for further screening - and even then your risk was only 1 in 19.

There is always a chance as million to one things happen, but the odds are vanishingly low that your baby has Downs syndrome. In the meantime, it might be helpful for you to understand why you didn't trust your medical team with very important information - there may come another time down the line when they are trying to help and without a full picture will, like this time, not be able to give you the right advice or treatment. Good luck and hope you can get some rest tonight.

Good advice. The more info you get now, the more solid your decision will be. Here's a lovely website by parents for parents:

positiveaboutdownsyndrome.co.uk/

The quad test is barely worth the paper it's written on IMHO; it gave me a 0.06% chance of Downs and guess what...

I'm the luckiest 0.06% in the world. I just wish I'd known that when he was born instead of being as upset as I was, with the outdated misconceptions of Downs I had then.

Namechange - I know I come across as crazy but had four bereavements last year within 6 months so my head is a mess. They are doing a panorama research trial at my hospital and I was worried they wouldn't let me be part of it if I said I'd done it privately. I was looking for three "low risk" results to set my mind at ease.

My combined result (purely the blood hormones messing things up as scan normal) has been the worst thing that's happened to me this year.. my head can't cope with it

Anyway I will have CVS results tomorrow they have just told me, and have now had blood taken for the panorama trial so hopefully CVS comes back with good news, then we get low risk from panorama too and then I can start to enjoy being pregnant! Still keeping it a big fat secret from most x

Underthefloorboards what a beautiful post. Thank you. And that link is just incredible - is your story there? 💖

The combined and quad tests have a fairly significant error rate both false positive and false negative. Your blood results are at the higher and lower end of the normal distributions but they are within the normal distributions.
The NIPT tests are far more accurate - they are still technically screening rather than diagnostic tests but you can feel confident in the results you’ve got.

Low Papp-a can be caused by a number of things, including abnormal placentation, blood clotting issues. High beta can be totally normal.

It’s also worth saying that the values of the serum analytes can be affected quite a bit by age, weight, whether you smoke, some ethnic statuses etc. Note this does NOT mean that those things affect your chances of Down syndrome etc, it just means that the algorithm corrects for them but it can introduce a source of error.

Bottom line: the likelihood is that everything is OK in terms of trisomies.

Hi @nervousFTM - hopefully I can reassure you. I had a 1/15 risk at combined screening almost exclusively based on my bloods - they were extremely similar to yours.

Bloods (where the NT is normal) are well known for false positives. We did CVS which came back clear and DD is 3 now and completely neuro-typical.

Given you've had a clear panoma result I would completely relax.

Sorey to hear you are so worried. Such a stressful time, I hope you’re kind is at ease soon.

Sorry to ask on your post. Out of interest - are the NIPT now available via the NHS? I remember reading they were being introduced in 2018. Is that every hospital or is it a postcode lottery?

Not sure if it's a lottery - I can confirm it is now available in South Birmingham but only if your combined test comes back higher risk.

No, we're not on there. Our experience echos many of the stories though in that we were very worried at the start having heard only medical negatives about Downs and not knowing how normal life with Downs actually is. It doesn't hold him or us as a family back at all.

My previous pregnancy unfortunately ended due to a TFMR because of Edwards syndrome. This time around my consultant said absolutely no point having the dual screening as we had already had the NIPT privately at the first opportunity. She said it’s as good as a diagnostic test (though obviously it isn’t one I am aware) I am sure your CVS will come back clear.
As an aside with the previous pregnancy our NIPT came back as high risk 1:5 as opposed to 1:100,000,000 and our CVS showed full trisomy 18. Highly unlikely yours will contradict the NIPT. Good luck

You have let them do the Panorama test for you a second time???!?!! At least the CVS was a different test. Now for the sake of duplicating a test you have already had done, you've just cost the NHS many many hundreds of pounds and potentially deprived another pregnant woman who comes up as high risk and can't afford to do an NIPT privately. I understand your stress, but seriously am a bit

@Namechange128 I paid £500 for private NIPT a few weeks ago. The test today was to form part of a research trial my hospital is doing - the same hospital who knows my CVS results are due in tomorrow (so perhaps they might think the NIPT is pointless, but they were willing to do it as I volunteered to be part of a further string to the Panorama test they are doing) - in fact the midwife who took my bloods today went down to the lab without me asking to see if my results were back.

Please don't judge. Due to very personal circumstances I do not wish to go into detail about, this could be our only shot at a baby and I'm very sadly not mentally equipped to deal with a baby who has a severe disability :(

@KTD27 thank you for sharing and I am heartbroken for you, for your loss. It sounds like you are pregnant now so I wish you a smooth ride as well 💖 so much love xx

@Hypermice this is really interesting, thank you so much! Xx

@Grobagsforever thank you so much for these comforting words and I'm so pleased to hear it all went well for you xx

@EeekPreggoAgain hey are just doing a research trial at my hospital in London. The first lot I went private for which is £££ xx

@EeekPreggoAgain @TinyTerror1 sorry meant to say they offered me NIPT and CVS straight away after getting the high risk result - I opted to go straight to CVS (it was last thing on a Friday, so I got booked in for the procedure on Monday) even though the midwife suggested doing the NIPT on Friday and if I changed my mind about CVS over the weekend, I could cancel Monday morning x

Just wanted to post my outcome in case any worried mums-to-be come across this thread when looking for answers or comfort in the future.

We are all clear for Downs, Patau and Edwards syndrome from the CVS results! So in my case Panorama is right (showed

Oh thats Great news. You must be thrilled!

@KTD27 it is definitely still sinking in 😅 I'm a super anxious mum to be - that is for sure 🤰🏻🤷🏻‍♀️. Been a lot of tears today. Thank you for your support xxxxx💖

I had the harmony (similar to panorama) at 10 weeks and got a low risk result. I then declined the NHS screening to avoid having this sort of issue to be honest (I still had the scan but no blood tests).

I don't rate the NHS screening at all to be honest, it's just an algorithm at the end of the day.

I'm really glad you got a good result from the cvs OP, I'm sorry you've had a difficult time recently and I hope you have a healthy and happy remainder of your pregnancy.

Thank you @Sunshinegirl82 - honestly wish I'd done what you did. It's been a bloody nightmare week! At the Birth Company - where I had Panorama done - they said "there's no point doing the combined blood tests now"... should have listened!

Thank you for your kind words, hope you have a happy healthy pregnancy too xx

Actually nervousFTM, there's a point in doing the double test. Blood results could spell other risk apart from DS.

"Patients having Papp-A level less than 0.5 MOM have a higher risk for preterm delivery, fetal growth restriction, and stillbirths along with increased incidence of hypertensive disorders of pregnancy. The lower the MOM Value of Papp-A, the more the chances of adverse obstetrical outcome."

So it's good to know so you can ask your doctor what to watch for and how to try to prevent it.

I've also got high HCG (think 1.4 or 1.5) and low PAPP-A (0.45), plus normal nuchal fold - 2.2.

I'm waiting for my Harmony results, it's been 5 working days...

But I'm also aware of the other risks for low PAPP-A, I already had headaches almost continuously for 2 days in a raw, when doctor took my blood pressure it was high.

So once I'm done with the Harmony, I'll go back to my midwife and ask to refer me to someone who can explain the risks for PAPP-A.

Also bought a blood pressure monitor, it's good to watch your blood pressure especially after 20 weeks to detect early onset of preeclampsia and ask for help.