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Very bad bloods (bHcg 3, 34 MoM and Papp-a 0,42 MoM) Any hope?

33 replies

sharzad72 · 03/09/2013 08:20

Hi everyone

I'm new here, but ever since I got my bad prognosis for Downs (1 out of 20), I've been reading a lot on this very helpfull board.

I'm scheduled for CVS on monday (seems like ages), but I'm really worried, because my bloodtest (1. trimester) was right on target for Downs.

bHcg: 3,34 MoM
Papp-a: 0,42 MoM

Nuchal fold and nasal bone was fine and within limits, but still....can one have this bad blood and still be pregnant with a healthy child?

I will be 41 on expected delivery date.

I would be very happy to see some more blood resultats, where both the bHcg were too high and Papp-a too low and here the final results.

It seems like people get bad odds for just, let say, the bHcg is high, but my bloods is just on target for pregnancies with Downs, so I recon my odds is actually worse than 1-20 Sad

Thanks a lot for your help in advance Smile

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Willothewhip · 03/09/2013 15:04

Please take heart. My bloods were much worse than yours (HCG was > 5 MoM). I was also 41 on my due date. My risk factor was 1:5. I chose not to have any further tests and gave birth to a completely healthy, chromosomally 'normal' baby girl in January.

Also, the neuchal fold and nasal bone readings are very important. Don't disregard them as our bodies all do different things hormonally when we are pregnant which can throw the blood tests off course.

It's a terribly worrying time and I really feel for you. Good luck with your CVS.

daluze · 03/09/2013 15:32

Sorry to hear, I know how hard it is to get high odds. Not exactly what you are asking, but I had two bad markers on 12 weeks scan, which gave odds 1:7, even though bloods were fine. I thought there was not much hope, since 2 markers and high odds. But now, more than a year later, my only worry is how to get my very healthy and active 8 months old to sleep. I had a clean CVS after the scan.
Just wanted to tell that odds are odds, and yours are still 19:20 that everything is fine. Take care and I wish you all the best.

imaginationzero · 03/09/2013 20:45

I feel for you completely!

I had the combined test at 12 wk scan. Baby looked fine moving all over and the neucleal fold was normal. Blood were Hugh and gave us a 1 in 90. We decided to go for a privilege neucleal scan as that gives more readings as wasn't keen to have a cvs as risk of mc. Baby again healthy with fold and nasal bond normal. Bloods came back and chance was 1:7.

Decided to have a harmony test which is a non invasive blood test for chromosome abnormalities. Costs £400 but gives a yes/no answer. Takes 2weeks to come back which were the most tense if my life. Dh and I fix loads if reading and were prepared for a downs result.

Had the call yesterday and all is clear so bloods don't necessarily mean everything.

I really wish you the best whatever the result!Smile

BellEndTent · 03/09/2013 20:51

I've also been where you are and my heart goes out to you, such a hard, hard time.

I can't remember what my bloods were exactly but had a 1 in 6 chance of Down's based solely on bloods and ended up having an amnio as I was too late for CVS and just had to know one way or the other and all was fine.

Not what you were asking for but just wanted to share. Even when the odds seem dreadful it doesn't necessarily mean anything. Please take care of yourself. xxx

CrispyFB · 03/09/2013 21:38

I had a 1 in 34, based on 1.81 bHCG and 0.23 PAPP-A. I was 34 at the time, normal nuchal. I imagine if I was older the odds would have been worse than 1 in 34.

Baby has typical chromosomes. I went to the Fetal Medicine Centre and they said it was quite possible the high bHCG is because I tend to have high betas early on in pregnancy and the two could be linked. Also the PAPP-A can be an indicator of a less than perfect placenta.. DS was the only one of my children to be a normal size, the rest were massive!!

CVS will give you the quicker, diagnostic result but if you want a non-invasive and almost as accurate test, take a look into Harmony.

sharzad72 · 04/09/2013 10:49

Thanks a lot, everybody Thanks

It really helps to hear other stories, and I can't do a thing about it, so it's better for me to be a bit more calm until I get the results on tuesday.

Actually, the Harmony21 test must be the same, as we call NIFTY-test in my country. It's brand new, and it's only one place who does it so far.

I called the clinic yesterday, and they said I could be the first, because they just got the holders for the blood home, but 1) it's very expensive and 2) because it has 10 days of delevering the answer, I'm not sure I can cope with that and 3) the hospital where I get the CVS for free is the best hospital with the most skilled doctors in the country, so even though I am scared to do it because of the risk, I think I can't be in better hands.

But oh, I wish, I didn't have to do it Sad

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mummytoh1 · 04/09/2013 16:20

Happened to me too, in 2010, with the following results:

bHCG 1.65 MoM
Papp-a 0.39 MoM
Nuchal fold 2.7mm
Age at birth 35
Risk factor = 1:15

I had a CVS which came back all clear, I was told my results were a 'variant on the norm'. My son is now 2 years old.

With a 1:20 you have a 95% chance of a chromosomally normal child, try to focus on that while you wait for the results. x

CrispyFB · 04/09/2013 20:07

Good luck! I waited it out for DS at 1 in 34, but if it had been 1 in 10 or lower I'd have done CVS, and 1 in 20 it would have been a much harder decision. I also know from hanging out on various due date boards that Harmony and its equivalents can be extremely expensive, especially if it's not that widely used in a country. I can see why you'd be leaning toward the CVS.

Smitten1981 · 04/09/2013 20:20

I had a 1:14 chance of Down's due to my blood results. I had a CVS and everything came back fine.

Worst time of my life but the CVS really didn't hurt and was over quickly.

I'm due next month, all the later scans I have had haven't raised any more issues at all. I just clung on to the fact that I had a 93% chance everything was fine.

Good luck with everything, and remember the odds are very much in your favour.

Smitten1981 · 04/09/2013 20:24

Oh, and I wanted to get the Harmony test but when I realised they just give you more odds I didn't go for it. I needed a yes or no.

The risk of miscarriage with a CVS is teeny and at least you'll have a definite result.

MrsDibble · 04/09/2013 21:45

Willowthewhip, just wondering how you coped with waiting all that time with the risk you were given? It was very brave of you to wait, and I'm really pleased your child was healthy.

sharzad72 · 05/09/2013 10:21

Thanks again, you sweet people Thanks

If it was my first child, I don't think I would be so worried, because yes, hormones can be different from person to person.

But with my daughter, she is now 2 years old, my blood results we're totally different (within the normal range) and I had a 1:2025 at the age of 38.

So I know that my bloods are not crazy per se Sad

Hopefully there are woman, who had their first child withour risk, and then number 2 with risk (and CVS then was negative for T21) Hmm

Trying to be positive, but it's really difficult these days.

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mummytoh1 · 05/09/2013 15:19

Hi

I posted a reply to you abit further up but wanted to comment on the 2nd child thing. When I had the 1:15 result that was my second son. I also had a two year old at the time whose risk was 1:8000. So yes it does happen and turn out fine. They're both boys, same father, but wildly different results. Hope that helps. x

sharzad72 · 06/09/2013 11:33

mummytoh1, thanks a lot for the info! Good to know that it can happen Thanks

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Willothewhip · 06/09/2013 23:23

MrsDibble thank you for your kind words. I have to say that it was an excruciating wait but we felt strongly that we didn't want any sort of invasive test (no judgement on anyone who does, but it just wasn't for us). We had a further in depth scan at the Fetal Medicine Centre which gave us a clearer view on more soft markers which were all negative.

Unfortunately, we were a couple of months too early for the Harmony Test to be available. I would certainly have had this if I could as the uncertainty was pretty difficult to live with at times during the rest of my pregnancy.

CrispyFB · 07/09/2013 17:53

For what it's worth, plenty of doctors only consider PAPP-A under 0.4MoM to be of concern. I forgot to add that!

Good luck tomorrow!!

CrispyFB · 07/09/2013 17:53

I mean on Monday.. I keep thinking it is Sunday, doh..

GoodtoBetter · 07/09/2013 19:06

In 2010 I got bad results for my combined test:

nuchal fold 1.6 and nasal bone seen
Papp-a 0.54
HcG 2.75
age 35

gave me a risk of 1 in 68.

I had an amnio and got the all clear and DD is now 2.3 yo. I had very bad sickness which it has been suggested would account for the high HcG and possibly the Papp-a being low was a natural variance.

I hope you get some more answers soon, I remember the terrible waiting. It's one of the reasons I'm not having any more children as I think through natural variance I would be likely to produce similar blood results (the combined test wasn't offered in my first pg) and I couldn't go through the stress of all that again.

Pudden · 07/09/2013 19:14

i was 40 when pregnant with ds and bloods came back at 1:4 chance od Downs. I was due to have an amnio but the night before I had a bleed which resulted in me going to hospital to make sure cervix hadn't started dilating. It hadn't and I said right there that I wanted this baby no matter what and cancelled the amnio.
Ds is now 9 and born without any problems

curlywurlyllass · 08/09/2013 22:05

Good luck for tomorrow

sharzad72 · 09/09/2013 06:44

Thanks a lot for the good luck wishes for today Thanks

I must say I'm quite nervous. Today I'm mostly nervous about the abortrisk, and tomorrow I will be more worried about the risk for Downs Syndrome.

Going to the hospital at 9 o' clock, so it´s in very short time. Yikes! Confused

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Pudden · 09/09/2013 13:14

Thinking of you Sharzad; by now you should be at home with your feet up.

When do you get the results?

sharzad72 · 09/09/2013 17:07

Thanks, Pudden Thanks I've been resting in front of the tv all day, so I'm pretty fine now.

It all went well - for what I know - didn't take long, and didn't hurt so much. And it was an experienced doctor who performed it, som I'm hoping for the best.

I get the FISH-results (isn't that what you call them in UK?) tomorrow between 2 and 4 o' clock am. Very exciting.

They actually made new measurements, and said that the 1:20 was wrong, and it was in fact 1:74. But still low enough, so that my husbond and I would want a CVS performed. But....if i had known it before hand, I think we would have done the Materni21 test. But now I just wanted closure and a answer.

Please, cross your fingers for me for tomorrow Smile

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CrispyFB · 09/09/2013 17:54

Well, that's promising you've been bumped down to 1 in 74! So glad the procedure went well, I have heard that with CVS if the heart is still beating after the procedure, then nearly all the risk has passed. It's different with amnio and you stay in suspense for days.

Nice and fast results! I did a late "safe" amnio at 32 weeks as I wanted to know before the birth - it took 30 hours for FISH (I was so shocked to get a call at 9pm at night, I assumed I wouldn't hear that day by that point!) yours sounds even faster. Keeping everything crossed for you!

sharzad72 · 10/09/2013 14:57

They just called from the hospital, and the results were inconclusive!!?? Yet she said, that it didn´t look like mosaicm, som they must have some sort of result, that they just don't want to tell me yet.

So I'll have to wait for tomorrow to get (hopefully) a final result.

It sucks!

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