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High Risk for Downs - low PAPP-A in blood

(45 Posts)
MabelMay Mon 30-Jul-07 12:25:16

Hi All
I'm feeling a little anxious at the moment. I'm 13 and a half weeks pregnant and last week had a nuchal fold test combined with a blood test to see what my risks were of having a baby with Down Syndrome. The nuchal came back fine (risk 1 in 4000), but the blood test came back saying my PAPP-A levels were very low (whatever they are!) and the DS risk from the bloods were 1 in 8; making my overall risk for having a baby with DS 1 in 75. i.e. I am definitely high risk. I've ruled out having amniocentesis as I have already decided I will have the baby no matter what, but I'd just like to hear from others who have been told they are high risk, either now or in the past.

Equally, I've read that low PAPP-A in the blood is also associated with other problems in pregnancy like stillbirths and restricted growth. Has anyone out there had low PAPP readings in their blood?

I'm feeling a bit emotional about it all. The Dr who did my test was so unhelpful about the results, so I'm hoping that maybe some mumsnetters out there might have similar experiences to tell me about, or some knowledge on the bloods...

Anyone like to share?!

Thank you! MabelMay X

Peachy Mon 30-Jul-07 12:30:18

Hiya

they didnt ofer PAPP-A afaik when i ahd ds3, however he was high risk downs too. I refused Amnio for the same reasons as you (and as I also have a child older with SN it didn't feel right, iyswim).

DS3 doesn't have Downs (he is SN but totally unrelayed to the bloods, not something you can test for).

Have you got the number of the Downs Syndromegroups? They can talk through this, also AIMS (antenatal results and choices) are very good for this sort of concern.

A piece of advice my MW gavce me was whenever I got too worried, envisage a ward with the same number of beds on as your highest risk (so 75), Only ONE of those
babies will have Downs Syndromw. I always found that helped put things in persepective for me.

MabelMay Mon 30-Jul-07 12:31:06

Btw, forgot to say I am 32 years old and this is my second pregnancy (have ds who is 18 months old and does not have Down Syndrome)

Peachy Mon 30-Jul-07 12:32:27

I was 9.

Can they give you a high definition scan for markers? taht eased our minds a lot, although is not conclusive

Peachy Mon 30-Jul-07 12:32:47

29. !

MabelMay Mon 30-Jul-07 12:35:46

Hi Peachy - thanks so much for that. AIMS sound like a good place to approach. I'm keen to find out more about the blood results...
I don't think I can have another scan until the 20 week anomaly scan.
Like you say, picturing 74 beds with healthy babies is a good way of looking at it. "High risk" is such a frightening way of putting things.

MabelMay Mon 30-Jul-07 12:36:45

Thank God for that!

Peachy Mon 30-Jul-07 12:45:14

http://www.arc-uk.org/ ARC not AIMS, getting my maternity-related groups confused (AIMS is actions improvement in amternity services iirc)

MabelMay Mon 30-Jul-07 13:59:53

Would still love to hear from anyone... MM X

gess Mon 30-Jul-07 14:04:05

There are definitely more detailed scans that can be done (not the usual 20 week one) but I'm not sure at what stage. Do make sure that they give you the extra detailed one.

I've always heard that the bloods can be way out. Are your dates definitely correct/did they use the correct dates for the calculation? Did you have any bleeding early on (I vaguely remember that can mess up the bloods).

Jossiejump Mon 30-Jul-07 14:22:08

Hiya
My bloods came back high risk-I paid £200 for a private scan (I had it at 18 weeks) in which they didn't find any markers for DS, so although this doesn't mean it is definately not there, it makes it a less likely. Apparently the likelihood of picking it up on a scan depends onthe skill of the person doing it and the quality of the machine-I have to say that the image onthe screen was so much clearer than on the NHS machine at 200 weeks. IU'm not out of the woods, my risk is 1 in 54, but it does mean that it is not all that I think about morning noon and night, so I am glad that I paid for the scan.
Good luck

Peachy Mon 30-Jul-07 14:22:12

We had the scan at twenty two weeks, the date booked for the suual scan, but only because they couldnt fit us in earlier than already existent appointment, could ahve been done a little earlier I think. they ahve set amrkers they look for,a nd check the heart for defects (sometimes linked to Downs).

Peachy Mon 30-Jul-07 14:23:33

Oh and amke sure the scanner is aware of the test results- ours wasn't, but as soon as she realised she found the huigher definition amchine and arranged extra time.

MabelMay Tue 31-Jul-07 11:20:47

Thanks for your messages. I didn't know you could get different kinds of scanners... I'm not due for another scan now until 20 weeks (I'm almost 14 weeks).
I've been reading up on low PAPP-A on the internet (BIG mistake i know!) and all I keep finding is "associated with adverse pregnancy outcome"; "associated with stillbirth"; "associated with restricted growth in foetus"... aaarrgggh. Would be better off not looking.
For me, Down Syndrome is by no means the end of the world. But the thought of losing the baby terrifies me.

thomcat Tue 31-Jul-07 11:45:03

Hi MabelMay I have a little girl of 5.5 who has Down's syndrome. I had basic blood tests done with her an was put in a low risk group and just got on with my pregnancy. It was a bit of a shock to say the least when she was born with Down's syndrome and we had a bleak few ays getting our heads round it. Then we realised how perfect she was and stopped waiting for the world to com crashing in and got on with the easy job of loving her. She 5.5 now as I say and attends mainstream school. She's just wonderful, hard work as she's a stubborn and naughty minx but I think a lot of that is her personality rather than the DS tbh! We're very lucky to have her

We also have a 19 month old who I was told I was high risk with from my initial tests and she doesn't have DS.

Now pregnant with no 3 and just ignored everyone this time round!

bundle Tue 31-Jul-07 11:47:42

mabelmay, I had a high risk (from my blood tests) that dd2 would have Edwards syndrome, a v serious genetic condition, but following an amnio was given the all-clear. obviously my hormone levels were on the edges of "normal" iykwim. if i were you i'd ask to speak to (even if it's on the phone) another obst who can explain a little more about your results.

MabelMay Tue 31-Jul-07 14:19:55

Firstly, Thomcat, thanks for your post. And congratulations on having two lovely children and another on the way. It's good to hear from someone with experience of parenting a child with DS. I've never thought that finding out your baby has DS would be a reason to terminate the pregnancy. I'd imagine the hardest part about it all is actually finding out - particularly in your case, AFTER the birth, so that in a way you grieve for the child you thought you were going to have. But I'd imagine it all just gets better from there...? Thank you anyway for posting with your story. It is a comfort to hear all the positives of having a child with DS.

Secondly, Bundle, thanks as well. I think you're definitely right about talking to someone professional who can give me a little more info on the results. I'm seeing my GP this afternoon and hopefully she might have someone she can refer me to. If not, I'll try the hospital. Also, I'm pleased to hear you got the all clear on Edwards syndrome in the end.

Thanks!

inglis Tue 31-Jul-07 14:51:30

I have been in this situation twice.

If the baby is looking well on the scan, growing well and the nuchal fold is not increased i'M absolutely sure he/she will be fine.

My risk was a lot higher than yours in my last pregnancy (1 in 13)with low PPAP-A and nuchal fold of 3.6 - but I went on to have a perfectly healthy baby boy.

Prior to that I had a more difficult time - but it was very clear from the 12 week scan that the baby was very sick. There were many structural abnormalities identified even at that early stage.

Relax, really - I've even think I've heard something about low bloods and food intake????

Speak to a good doctor - and try to put your mind at rest.

MabelMay Tue 31-Jul-07 15:22:59

Thanks, Inglis.
I think you're right. The scan certainly hasn't thrown up any anomalies (although i know this often only happens in 20 week scan). The bloods tell a completely different story - but I was wondering, as you mentioned, if diet can be related to the blood result at all... I think it unlikely otherwise wouldn't they just tell me to eat more or less of whatever they thought it was I lacked/had too much of...?

I'm sorry to hear about your first pregnancy. And it's encouraging to hear about your test results versus the outcome of your second pregnancy.

I'm already feeling more relaxed about the whole thing. Mumsnet doing its wonderful job jet again!

thomcat Tue 31-Jul-07 16:59:36

Glad you feel better and fwiw I think you have a great outlook/attitude. You know where I am if you need to ask me anything, meanwhile good luck and enjoy your pregnancy

Ebags Tue 31-Jul-07 17:14:06

Hi MabelMay

I too had a good nuchal scan but then was given a high risk of having a DS baby because of low PAPP-A (and high HCG) in my blood. My overall risk was 1:134 against a background risk of 1:480.

My husband and I made the difficult decision to have a amnio after a long chat with screening midwife and we were very relieved when the result came back as negative for DS.

Even so, like you, I trawled the web for answers as to why my PAPP-A levels were low and scared myself stupid with all the stuff I found out. However I've had to give up on the ideas of premature labour and low birth weight because I'm actually one day overdue today, the baby seems well so far and my bump measurements suggest I'm going to have a big one! I'm not sure when I'll allow myself to stop worrying about every little thing but I've at least come round to the idea that maybe you can have a low PAPP-A result without it meaning something bad is going to happen.

inglis Tue 31-Jul-07 17:25:00

Certainly I don't think any doctor would support the food theory - but I have heard it/read it somewhere. Put it this way I don't think there have been any scientific studies undertaken to test it as a theory. But still you never know ...

Honestly! That first silly doctor should have done a much better job at putting your mind to rest about everything - pleased you're feeling more positive now.

awayfromhome Tue 31-Jul-07 20:04:11

MabelMay

I had very low PAPP-A levels with my second child, around the 2nd centile. I went onto to have growth restriction with the pregnancy, but had a very healthy but small littly boy at 36 weeks

I also had exactly the same pregnancy with my first child, who was small but perfectly healthy, although I didn't have PAPP-A levels taken at the time.

My consultant (Hong Kong) told me that growth restriction can occur in women with PAPP-A levels that are very low, ie under the 5th centile, although low levels doesn't mean that it will .

I now have a very tall (90th centile) little girl and my ds now 9 months has now caught up to the 50th centile for weight and height.

MabelMay Wed 01-Aug-07 17:59:15

Thanks Awayfromhome, I'm not even sure what centile my PAPP levels are (yes, the dr was hopeless at informing me) so I'll show the results to an obstetrician at the hospital and we'll go from there. Fingers crossed. Good to hear both your babes are healthy and thriving.

MabelMay Wed 01-Aug-07 18:03:23

Ebags, your message was v encouraging - glad to hear your baby is blooming and keeping you waiting, after all that concern with the PAPP-A levels.
My first child (ds now 18 months) was 10lb and came 14 days late so I know how long these last days feel! It also means if I DO have a smaller baby and an early delivery, it'll be a totally different experience to my last pregnancy. X

tib Mon 27-Jul-09 15:59:39

Hi Everyone,

How awful is all this worrying!!! I had my blood results on Saturday which told me my PAPP-A were very low. Also at 11 weeks the baby was too small for measurement for the nuchal. 43mm and the threshold is 45mm. My risk was 1:13. Having CVS tomorrow. Has anyone elses baby been to small for nuchal scan and has anyone had CVS. I'm not sure Ican do the wait to get the results. God this is probably the worst time ever!!!
zo

ButtPlug Mon 27-Jul-09 16:09:45

OP, had the same kind of profile - low PAPP-A and 1 in 60 risk of baby having DS. I went on and had the triple and that 'improved' the risk but I'd decided not to have a diagnostic test anyway. Had a couple of growth scans to keep an eye on growth and all looks ok, baby's due to arrive next week.

How low was your PAPP-A? Mine was 0.32 which is low but not as low as it could be.

tib Mon 27-Jul-09 20:20:14

My PAPP-A WAS 0.17. Not really sure what that means. I know 0.40 is normal. Great news your baby has grown normally. Fingers crossed for you.x

mowmi Mon 27-Jul-09 20:52:09

Hello ladies just thought I'd drop you a line with my recent nightmare.
I ended up with a 1 in 2 chance of ds - Low papp-a 0.4 and high hcg + 3.4 NF measurement.
I had cvs and walked out thinking I had 1 in 9 chance - I was in a bit of a state so they held back the revised result (when bloods came back) until cvs result was back.
Good news is we got the all clear - can not believe how lucky we've been - had through cardio scan with consultant and they don't seem overly worried - back at 20 weeks for another cardio scan.
cvs wasn't the most pleasant experience but was over so quickly.
Wish you lots of luck for tomorrow - I had my results back in 2 days so didn't have long to wait.
Will pop back and see how you are doing x

Tina150 Fri 09-Oct-09 10:54:49

Hi,

i've just had 2 scans, at 12 weeks and 13 weeks, i have low PAPP-A. I'm really worried. It is 0.255. Is any mother out there experiencing the same? i have 2 boys already and i did not have this problem then, although my 2nd son was born at 4.12 lbs and i've been told this baby is small too.

Littlemissmischief Fri 09-Oct-09 12:47:51

Hey MabelMay, just stumbled across this thread and thought id share my story with you.

When pg with my DS I was told to have the bloods done for the test and wasnt really given the option to say no, although I would of gone ahead with it cos I never imagined anything would be wrong. I had the 2 bloods taken and was told that the midwife would only ring in a week if there was a problem, so when a week later while at work the midwife rang I knew what was coming... I was told mine was 1 in 150 chance. I was devestated and cried for days thinking all my DP's family would blame me, I was pressured for an answer about what to do about the amonicites test but decided the same as you, it wouldnt make a difference I would still have the baby and i wouldnt have forgiven myself if I miscarried due to it so I turned it down.My Mum also said to me, if you didnt know what the chances should be, you would be quite happy with 1 in 150 as that is good odds but compared to what it should be thats where the worry sets in isnt it.
Dont get me wrong if there was a 100% safe way to find out, I would of. Not because I would have made a diffent decision but because I would of liked to be prepared, I got so much support and advice from some lovely ladies on Mumsnet, one who told me she had a high risk baby and that baby didnt have DS and then her next baby was normal levels and then did have DS! It goes to show it isnt always right. I saw pictures of their beautiful children and felt much better about the whole thing.
In due course I gave birth and was waiting with baited breath to see if he did have DS, however because he came out so quickly all his face was swollen and he couldnt open his eyes for the first few days so they couldnt tell me for definate and then no one ever mentioned it again, he is now almost 3!
I must say I was so dissapointed with the way it was dealt with throughout by pregnancy and I would definately strive for better next time if it was to happen again.

I wish you all the best hun x x

first1 Fri 09-Oct-09 13:16:11

Sorry for my ignorance but what is PAPP-A? I'm 8+4 weeks pregnant with my first so all this is new to me. Had a scan at 6+4 which was fine but no mention of all this sort of thing? I'm 21, does that lower my risk of DS?

Cadelaide Fri 09-Oct-09 13:25:19

Hello Mabel, my blood test results were similar to yours and it wasn't until I got the results that I realised I didn't want amniocentesis anyway (I so wish I'd thought that through before!).

I just want to say that you may not feel this level of apprehension all the way through your pregnancy. I was shocked when I got the results but my confidence grew as time went on and I went on to have a very enjoyable pregnancy, the best of 3 in fact.

When DS was born he was handed to me pink and breathing and at that moment that really was the only thing that mattered. I just loved him, whatever. I had 24 hours before he was looked over and during that time I gazed at him and pondered, but mainly I was overwhelmed with relief that he was well.

Cadelaide Fri 09-Oct-09 13:27:47

Oops, I see this is quite an old thread.

Tina, might be worth starting a new one of your own? smile

I know nothing of PAPP-A, sorry, but I'm sure someone will be along to reassure you.

corblimeymadam Fri 09-Oct-09 13:32:25

I had something similar with this pg - bloods gave me a 1:33 risk but nuchal/nasal and age combined upped to to over 1:1000 general risk. I was told that I could have whatever tests I wanted but they didn't deem it necessary so I didn't. My dsis had high risk bloods for both of hers too and had amnios but they were both fine. With dd they didn't do bloods but from measurements my risk was slightly higher (1:800) than this one!

With this dc a kidney prob was picked up at 22 wk scan (not major) and I have had scans at 28 & 32 wks to keep an eye on the healthy kidney. No other markers of any sort have been picked up.

Obviously this doesn't mean that all is fine - but so many problems are totally unscannable for anyway. Many don't show until a child is older.

Not sure if this helps but it is another case to ponder over! smile

Good luck and try to enjoy the rest of your pg - remember even 1:75 means that 74/75 people in your situation would have completely healthy babies!

blaaaa Sun 24-Oct-10 22:59:22

my scan came back fine but my bloods gave me a 1 in 6 of downs, had a cvs and came back fine but they are keeping an eye on me as low papp-a, my last scan at 28 weeks was fine but they said they will talk about inducing me at my 36 week scan, i am 29 weeks now and have another scan at 32 weeks, so scared that things are going to go wrong, lost identical twins at 22 weeks due to twin to twin tran and gave birth to them, this pregnancy was a complete surprise as was not going to have any more children have a boy of 13 and girl of 4, i am 42, hope and pray this pregnancy turns out ok,

HeisAble Fri 22-Apr-11 19:29:54

Help. Mothers or mothers to be I have just been given a ratio of 1:68 ratio of Down Syndrome. My NT scan was good but my bloodwork showed a high HCg and a low Papp-A.and at the age of 35 i am extreemly worried.
I have a level 2 scan sceduled for 16.5 weeks.i really do not know what to do and it feels like i am loosing it

Riverrat Tue 13-Sep-11 19:12:44

Hi,

I had two screening tests for Down syndrome which gave me very different results.

The first was done by the NHS which came back at high risk (1 in 142). I had the test repeated privately and my risk came back at 1 in 776. There was 5 days between the two tests. The first was at 11 weeks 6 days and the second at 12 weeks 4 days.

In both tests the NT scan and beta HCG was normal but my PAPP-A was low (0.2 and 0.35 MoM)

The NHS have offered me an amnio as I am considered high risk. Which result should I believe?

Has anyone else had two screening tests with different results?

Cheers, Riverrat

MamaChoo Wed 14-Sep-11 08:21:19

Hi Riverrat,

I am high risk by the NHS screen and low by private. I decided to believe the private. This is why:

1. My NHS hospital only used two markers (NF and bloods) combined with background risk. My private (FMC) scan used a quintuple test including three soft markers (heart, venous ductus flow and another one).

2. The accuracy of the NHS combimed test is only in the region of 80%. The accuracy of the private test was 96%. Therefore it was more likely the low risk was correct.

In my previous pregnancy I had very low PAPP-A and they were concerned about growth restriction - imagine everyone's surprise when they hauled out a 4.2kg bloomer.

SmileyMS Wed 14-Sep-11 14:22:08

My early scan also showed good measurements for the nuchal fold but unfortunately my blood results like yours were in the 1:70's.

Huge shock, lots of tears and a very helpful conversation with the person responsible for delivering the news put me in touch with the fetal medicine centre in London. 3 hours later (& about £180) I was given a much more detailed scan, more blood tests and my ratio was improved to a risk score that stopped me worrying.

Sadly the tests are never conclusive and not everyone has a few hundred to spend. For me paying the £180 meant that (i) I stopped worrying and (ii) I didn't even think of having any more tests as I'd been reassured as much as I could be until baby actually arrives.

Hope all goes well

Brojul Wed 14-Sep-11 16:52:50

Hi,
I recently turned down the DS test as I didnt want to get overly worried if the results didnt go in my favour (my aunty had DS). I felt that I was going to have the baby no matter and why worry myself potentially unnecessarily. The midwife said there is no real medical benefit of knowing early. DS have many levels- and you dont really know what the severity will be until the baby arrives. I hope its not but if it is I hope I will manage ok/well like most parents of DS children (and other medical issues). If it is Ill definitly be using whatever support groups I can find!

Riverrat Mon 19-Sep-11 13:22:45

Hi MammaChoo,
It very reassuring to hear that your baby arrived big and healthy.

I asked my consultant which test to believe. Both tests are apparently identical. He told me that the first test is likely to be more true because PAPP-A measurements become less accurate as the pregnancy progresses.

So, I've decided to have an amnio in 2 weeks time. I am in a kind of limbo until then, Sarah

NicolePoth Wed 22-Aug-12 16:21:00

Hi, I just wanted everyone to know who's screening test for down syndrome come back high risk that you can take a simple blood test. The blood test is called Verifi and there is another one called MaterniT21. It is 97%-99% accurate for finding an extra chromosome 21 and 18 and 78% accurate at finding an extra chromosome 13. The test carries no risk of miscarriage and can be taken as early as the 10th week of pregnancy. Even if your odds are 1 and 68, that is less than 2% chance of having a baby with down syndrome.(Not high)The screening test is not very accurate and scares a lot of people unfortunately. I hope this helps some people out there. Good Luck and don't stress!!!

My Papp a levels were low in this preg (2nd preg, I'm now 27 weeks)

They were 0.29 and risk of ds is 1:350 which isn't considered high risk so I'm having extra growth scans (all ok so far, she's on the 50th centile atm) and have been prescribed a daily dose of low aspirin to keep the blood flow smooth.

minipie Wed 22-Aug-12 19:42:47

OLD THREAD ALERT

Nicole it seems you may be advertising the Verifi test, if not then suggest you start a new thread.

I am a bit surprised to hear there is a blood test available already since I was told about a month ago that a blood test was still being researched (in fact I gave blood when having my CVS to help them with their research).

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