High levels of AFP

[Annie75]

Hello. I'm 21 weeks pregnant with my first baby, and was called in yesterday by the midwife to talk about higher than average levels of AFP (alpha-fetoprotein) following the Down's test I had at 16 weeks. My scan was the week before, and all was well, so I was shocked to find there might be a problem

Apparently, raised levels are associated with smaller babies and possible neural tube defects (Spina Bifida being the example given). They now want me to go on to consultant-led care for the rest of my pregnancy (I had visions of having a hands-off pregnancy and delivering at home, so I think this compounded my feelings of anxiety and that I was somehow losing control of my pregnancy). Anyway, the midwife was very nice and explained it all clearly - that additional monitoring is precautionary etc etc, but I can't help worrying and am half-wishing I hadn't had the test.

Anyone else recently experienced the same? x

Not experiencing same - but if you've had 20 week scan and they said spine was fine - then any neural tube defect that might appear should be v minor (sorry - not sure I phrased that well) - NTD sound V scary - but mostly if severe, which would have been seen.

As for DS...again, major issues SHOULD have been picked up at scan - are they offering further tests that can put your mind at ease or confirm either way? Or are they just keeping an eye on you?

i understand your wish for hands off pg - I am the same, have had no tests at all other than scans - so might get a shock!!

Its easy to say don't worry - try and get some deifintes, and see what other (least invasive) tests they can do -frequent scanning as babe gets bigger should help, as physical dev can be clearly seen.

Not sure if this has helped.

Good luck

I'm no expert but am not sure raised AFP levels alone, with no other indications, are a good reason to switch to consultant-led care.

Have you had / will you be having an anomaly scan at 18-22 wks? If possible ask to delay any referral till after that as your arguments for MW care and a homebirth will have much more clout if backed up by a clear anomlay scan.

Once you've been put in a 'high risk' box it can be very, very difficult to get back into 'hands-off' care - I've got stuck and if you do too you have my sympathy .

Hi Annie75
I had raised AFP levels in my last pregnancy and a scan showed immediately that spina bifida was present. If your scan seemed ok and the spine could be seen clearly then I would think that you could rule out the two most severe types of spina bifida. I can appreciate how worried you must be, but I learned that raised AFP can also be an indication of a premature baby or pre-eclampsia. Neither great things to have, I know, but if either are going to affect you then at least you will be getting the best possible care as it has been identified so early. Hopefully it won't be anything at all - even false results are possible with AFP. Good Luck. x

Thanks, both for the replies and advice. It can feel quite a lonely business being pregnant, can't it? And the weight of responsibility for this new little life...

I have had my anomaly scan last week, and they were supposed to talk to me afterwards about the raised levels (someone lost the paper with results from my file). Midwife yesterday said that they were given instructions to scan the spine carefully, which they did, and didn't pick up anything then. But the other worry apparently is that there could be a prob with the way the placenta is nourishing the baby (I've been chomping back the blueberries etc every morning, so hope it's not been wasted!!), even though the baby is fine in terms of current cranium and femur measurements.

I hadn't thought that I might find it hard to get back off the consultant-led care if future scans reveal everything to be okay. I'll make sure I'm extra clear that that's important to me at my first consultation. I sooo want a home birth if everything is okay.

MrsBadger - do you mind me asking what you're in a high risk for, and how you've found being under consultant-led care?

I have a mild inherited blood clotting disorder that I only found out about a few years ago when my mum had a DVT - never had any symptoms myself, mum had two healthy normal pregnancies etc.

My GP wasn't at all worried about it interfering with the pregnancy, and just wrote a v polite letter to the consultant asking advice about the right anti-clotting stuff to give me in the weeks after the birth (when you're more prone to clots).

However this meant I automatically, without anyone meeting me or reading my notes or history, got referred to the High Risk unit.

Saw a very junior doctor who leapt in alarm at the idea of a homebirth, water birth or even active labour as she said I'd definitely need continuous foetal monitoring and would hence be flat on my back on a bed throughout.

Very cross indeed about this at the time but am being a bit more rational now.

I'm waiting for a 24wk uterine arterial Doppler to check the placenta is working properly - I suspect you might get one too and if not might be worth mentioning it - because the Professor (who I wrote to after the rubbish jr dr appt) seems to think that if that's looks ok then I can consider more birth options.

TBH my local MW is a bit useless so it's actually nice to think my care is in the hands of someone who has at least heard of the clotting thing, but I still have no desire to labour strapped to a bed!

(man, that was long - sorry)

I'd be pretty annoyed too - you don't get any warnings that once you've been referred, you'll be 'medicalised'. It certainly hadn't occurred to me I'm not sure I'd have had the test if that does end up being the case - apparently 60% of women don't have the triple test anyway.

It makes you wonder whether this midwife/consultant thing is a bit of a turf war or whether they are paranoid about litigation if they aren't mega-cautious about everything.

I'd keep revisiting the fact that you'd like a less-interventionalist labour - make them review your case regularly as having the labour you'd prefer is really important, I think (or at least having your feelings about it seriously taken into consideration).

Thanks - I'll ask about the doppler check at my next appt. So are you about to have one? Good luck, and let me know how it goes x.