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Pregnancy

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Original poster

High Risk for Downs - low PAPP-A in blood

44 replies

MabelMay · 30/07/2007 12:25

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

OP posts:

ButtPlug · 27/07/2009 16:09

This reply has been deleted

Message withdrawn at poster's request.

tib · 27/07/2009 20:20

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 · 27/07/2009 20:52

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 · 09/10/2009 10:54

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 · 09/10/2009 12:47

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 · 09/10/2009 13:16

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 · 09/10/2009 13:25

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 · 09/10/2009 13:27

Oops, I see this is quite an old thread.

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

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

corblimeymadam · 09/10/2009 13:32

This reply has been deleted

Message withdrawn

blaaaa · 24/10/2010 22:59

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 · 22/04/2011 19:29

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 · 13/09/2011 19:12

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 · 14/09/2011 08:21

Hi Riverrat,

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

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).

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 · 14/09/2011 14:22

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 · 14/09/2011 16:52

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 · 19/09/2011 13:22

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 · 22/08/2012 16:21

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!!!

DesperateHousewife21 · 22/08/2012 17:18

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 · 22/08/2012 19:42

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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