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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:
Peachy · 30/07/2007 12:30

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.

Original poster
MabelMay · 30/07/2007 12:31

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)

OP posts:
Peachy · 30/07/2007 12:32

I was 9.

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

Peachy · 30/07/2007 12:32
  1. !
Original poster
MabelMay · 30/07/2007 12:35

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.

OP posts:
Original poster
MabelMay · 30/07/2007 12:36

Thank God for that!

OP posts:
Peachy · 30/07/2007 12:45

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

Original poster
MabelMay · 30/07/2007 13:59

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

OP posts:
gess · 30/07/2007 14:04

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 · 30/07/2007 14:22

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 · 30/07/2007 14:22

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 · 30/07/2007 14:23

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.

Original poster
MabelMay · 31/07/2007 11:20

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.

OP posts:
thomcat · 31/07/2007 11:45

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 · 31/07/2007 11:47

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.

Original poster
MabelMay · 31/07/2007 14:19

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!

OP posts:
inglis · 31/07/2007 14:51

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.

Original poster
MabelMay · 31/07/2007 15:22

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!

OP posts:
thomcat · 31/07/2007 16:59

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 · 31/07/2007 17:14

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 · 31/07/2007 17:25

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 · 31/07/2007 20:04

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.

Original poster
MabelMay · 01/08/2007 17:59

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.

OP posts:
Original poster
MabelMay · 01/08/2007 18:03

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

OP posts:
tib · 27/07/2009 15:59

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!!!
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