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Low PAPP A was missed - angry but what can i do??

(7 Posts)
Pagetta Thu 10-Mar-16 14:05:03

So i'mnow 26 weeks with my second baby.
12 week scan all fine.
16 week check with midwife all fine
Had my 20 week scan, followed by appointment with consultant (i'm under consultant led care as lost lots of blood with DS1). That was all standard.
There was a small anomoly at 20 week scan with a measurement which meant two further scans with fetal specialist. I had one four days later, and all was fine.
then at 23 weeks i had a second scan just to double check all was fine.

At this scan, all was fine with the issue, and baby declared a-ok.
But hubby asked the doctor " how come you're scanning leg measurements - is that standard that you do them all at every scan?"
She said, yes but with your low PAPP A we would be probably be doing this anyway.
We said pretty much 'WTF?!"
Cue midwife scurrying about to find my notes.
Basically my bloods taken at 12 weeks showed low PAPP A - this was not raised to me at any point until that minute! Not with my consultant or anything.

They then said "oh we'd better check your uterine flow too then" and found it to be abnormal. Why wasn't this checked at 20 weeks??They put me on aspirin to help, but i've since been told that unless you start that before 14 weeks it has little to no effect.

Now, as it stands baby is growing fine, and all is ok, and next scan is next week as they want to keep an eye on growth.

BUT - I am really angry that this wasn't picked up sooner - why wasn't i called when the blood results came through a week after 12 week scan? I could have been on aspirin all this time!
Midwife who i saw last week said this wasn't responsibility of the mid-wife team but the scan people and my consultant.
Do I complain - if so who to? If my husband hadn't asked that off-hand question, would they have even done a uterine flow scan? Would we have had this all explained?

I'm really really annoyed about this and feel quite let down.

kiki22 Thu 10-Mar-16 14:10:50

I would be furious at this its totally unacceptable. I would be making a formal complaint to get to the bottom of how this happened and make sure that it will not happen to anyone else. Call your consultants office say you want a meeting if they say no or delay tell them you need the details of how to complain.

I'm glad everything is ok so far flowers

scrumptiouscrumpets Thu 10-Mar-16 14:20:46

I had a low PAPP-A in my first pregnancy which nobody commented on, it is not standard in Germany apparently so it was just ignored. I only found out after my DS was born prematurely and it took quite a while to get over the fact that nothing was done about it because it is not standard practice, which it is in other countries. I wish I had talked to the consultant about it. If I were you, I'd definitely demand an appointment with the consultant or at least the midwife and ask them wtf you were not informed! I suppose it just got overlooked, which is a terrible mistake they need to be made aware of!

primarynoodle Thu 10-Mar-16 16:51:50

How low was your papp a pagetta? I am having extra scans under consultant care because of an unrelated devestating last pregnancy where anomolies were found at 12 weeks.

This time baby seems fine (plotting around 30th percentile but me and dp are not the tallest) but my papp a was 0.54 mom at 12 weeks.. im having extra scans (think i would have anyway though) but consultant doesnt seem to think that that level is an issue?

Pagetta Thu 10-Mar-16 17:15:59

i think the told me they are supposed to be over .41 and mine are .36 - not massively low but definitely under, nonetheless.

The midwife who i saw last week said that although low PAPP A on its own is not a huge red flag, the consultant absolutely should have flagged this as soon as results came in and i should definitely have had uterine flow checked at 20 week scan and had it all explained. She did apologize and said it wasn't right no one had discussed it with me, and that there had been no follow up.

Baby is currently plotting on 50th percentile so as it stands all ok, but having regular 4 weekly scans from now - especially due to uterine flow issue.

I have appointment with consultant on Monday so will bring it up with her then.

A slight aside, but the sonographer who did our 20 week scan didn't fill me with much confidence - she got really stressed as baby was moving so much she couldn't get a good picture. She didn't ask me to empty my bladder - which the fetal specialist did at both later scans as she said it helped baby stop bouncing around - and she was the one who got a slightly abnormal measurement that had to be rescanned. At the re-scans the measurements were nowhere near what she got - and I do feel like she should have been the one to check my uterine flow at that scan too. All in all I do fee like my 20 week scan was a bit of a balls-up!

thankfully both (very detailed) rescans with specialist showed baby to be ok (or as ok as a scan can suggest it to be!)

MoonriseKingdom Thu 10-Mar-16 20:35:55

If you want to complain and are not sure who to complain too I think you have a few options.
See if your hospital has a PALS (patient advice and liaison service). They would find out on your behalf who to complain to and help you with the process.
If they don't then I think options would be writing to head of midwifery or your named consultant. Make it clear this is a complaint and you expect a reply. There should also be a complaints procedure (may be details on the hospital website).
You need to be clear on your head what you want from a complaint. I would suggest you would want to know if your hospital has a policy on low Papp-a, if so what should have happened, whose responsibility this was and if the system needs more safeguards to prevent this.

Pagetta Wed 16-Mar-16 14:16:49

Moonrisekingdom that was good advice thank you - i didn't want any compensation or anything and I can't turn back time, but i did want it raised and acknowledged.

I saw my consultant on monday, and actually first of all got given a different doctor, who opened with 'so I've spoken to the consultant and i'm going to be your doctor today - now you're here today to have extra scans on baby's brain right?' errr NO - that was resolved - i'm here cos of Low Papp A etc - bad opener for her given I was already bit miffed!

Anyway, I then raised my issue with her, and she went and got consultant who subsequently spent a good hour explaining absolutely everything about Low Papp A and poor uterine flow in a lot of depth, which was really really useful. She also promised i would always see her from now on, not another doctor if she was busy - which is great news :-) - and also that if she OR i had any concerns at all, she'd make sure she did all my scans too instead of sonographer (as it was screening team and sonographer who didn't do what they should have with low Papp A issue)

It was definitely worth raising, the consultant (different to the one i saw at 20 weeks one who was a locum) was fantastic and really sympathetic to the fact i have a silly busy job and fitting appointments where they could to make it less stressful for me (obvs this is priority to work, but when i'm booked on flights to scotland at the time of her only clinic it proves a bit difficult!)

thanks all, and off the back of this i'd say don't be afraid to push things if they try to fob you off. They're not being slack, but are busy and stretched and sometimes need a poke to remember that although they see pregnant women every day we have no clue what it all means!

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