Low PAPP-A Levels

[TobiGus]

Had a letter from the hospital after 12 week scan to say I have low PAPP-A Levels. All it said was that this is linked to smaller babies later in pregnancy and no further information other than they'll conduct scans for growth after 28 weeks.

I hate recieving letters like this and there's no one to immediately talk to because you can't get hold of the midwife until the 16 weeks review.

Has anyone else had experience of this? I've read conflicting things online but some suggest this is common and not the cause for concern you initially think it is.

Would appreciate hearing people's experiences. Am really worried.

Hi I had extremely low HCG and Papp-A. It did not negatively impact that pregnancy. I was encouraged to take low dose aspirin to aid placental function from 12 weeks.

Hi, I had the letter too which made me feel sick with worry. Papp a is apparently a relatively new thing to be looked at and there is some evidence that it can be linked to smaller babies as well as prematurity. This doesn't mean that your baby will definitely be small, just that there's a higher chance as Papp a can affect how the placenta works. Once I got to speak to someone about this I completely calmed down. I took asprin throughout pregnancy as it can help to allow more oxygen to flow through to the placenta and had regular growth scans from 28 weeks. My baby measured small on all the growth scans but because he was tracking the 10th centile line that was fine. In the end he was born at 40 +3 and was a very healthy, very average, 7lbs 8oz. There was a really good Facebook support group that I joined which reassured me. I can't remember exactly what it's called but something like low Papp a support group.

I had low PAPP A and high HCG which is an indicator of Downs Syndrome and as such I’ve had a lot of testing, doctors visits and a lot of information.

In line with pps it could be an indication of low birth weight caused by the placenta. The recommendation I’ve received from multiple practitioners is 2 aspirin at night time, before bed. Otherwise there’s nothing you can do.

Note, this can be constipating increase your fibre intake.

Do you know what your PAPP A levels were?

I can’t believe a letter like that would be sent out to someone without any guidance but doctor google. Don’t stress, it’s likely nothing.

I have just experienced the same thing, no indication of what my levels are either.
I’m 35 just turned, and was given a low risk for downs of 1:212 and 1:1400 for patu.
Even though I’m low risk these numbers for my age are relatively love, any advice would be welcomed

@Ttcbm8687
These risk levels are provided by various things including age, weight, size of baby, smoker status, hormone levels. Anything under 1:280 is typically high risk and suggested to have more testing with the hopes of identifying any issues and supporting parents before child is here.

It would probably complete the NIPT (bloodwork) to have some reassurance.

My risk was classed as low as the cut of is 1:150 but yes I will be having a NIPT to be sure

@JaiPow sorry but I completely disagree! Given the bloodworks are such low risk (particularly for age which is borderline), I would not personally have NIPT in the absence of further clinical risk factors. The NIPT accuracy is lower in this context (lower risk sub groups) which would worry me. Particularly given the alarm false positives can bring up. For instance almost 2/3 of Edwards NIPT detections are false alarms in the general population.

Obviously it is personal preference and if someone wants to delve further out of curiosity and is happy they want to manage potentially unnecessary stress - with limited benefits (a slightly more refined risk assessment when already low risk), that is personal choice.

Low Papp-A can occur for a number of reasons. For instance it occurs more frequently with IVF babies and some women are prone to it. However if bloodworks matched the classic low Papp-A and HCG that indicated Trisomy 13 or 18; or High HCG, Low Papp-A associated with Downs, then the tests would have flagged this up as a risk factor already.

Thank you SarahD19
I didn’t actually find out what my low Papp-a levels were as I was told it’s nothing to worry about, and I’m guessing my Hcg levels were normal as they didn’t mention them.
I am a worrisome person so for me the NIPT is just for some extra reassurance, my 12 week scan was fine and my NT was normal at 1.7.
Iv been told by so many the NIPt is a waste of time for me as it’s still not a definitive answer but for me to relax I think il go ahead with it

@Ttcbm8687 it is absolutely personal preference! A low risk result from NIPT can be very reassuring for many - statistically many will have a low risk result from NIPT. However it is just a case of knowing it can open a can of worms. Many think they want to know, until they get a “high risk” result that can result in weeks, often months of stress.

Obviously there can be cases NIPT will pick up that traditional screening might miss. However NIPT only looks for the 3 main trisomies - it cannot rule out the majority or pregnancy complications. It can also bring up false positives - accuracy is severely compromised with Edwards and Pataus (or any condition that is not Downs).

As long as you are informed, that is what counts. Do whatever feels right for you.

@SarahD19 sorry to jump on here... I know you've probably done hours, days and weeks of research on NIPT and I admire your knowledge about it. But please bear in mind that scientists/geneticist are constantly working on improving NIPT tests. I have spoken to my geneticist on Friday as I am due a NIPT (my personal choice after previous T21 diagnosis) and have challenged the false positive rates for T13 and T18 and although he agreed that it used to be falsely advertised, there have been major improvements made over the last few months and weeks. And where I appreciate that maybe the standard high street clinics might not have the newest technology, things are more reliable and are on there way to be more accurate.

@NoCallerID agreed it is likely a work in progress as science is always developing. However higher accuracy being technically possible and embedded are different things. And given that even CVS is misrepresented and actually is a direct biopsy of the placenta (which NIPT seeks to emulate indirectly through the mother’s blood), it is simply not possible for the accuracy to be that high for the most part - even if the issues inherent to NIPT were addressed perfectly.

My point isn’t necessarily even around the accuracy of these tests - so much as the motivation and what can truly be gained by prenatal tests in the absence of clear clinical indicators/need. Often people seek out these tests as they feel extremely anxious about pregnancy and birth (which is perfectly natural) and they want guarantees everything will be ok. Marketing of NIPT and prenatal tests taps into this and creates an illusion of certainty much of the time - a certainty that cannot be achieved.

I’m not saying prenatal tests do not have their place. Just a note about being cautious and recognising no test is a fix all. If a person is low risk from tests and remains anxious - recommending more and more tests may not always be helpful and can increase anxiety levels for instance.