Please help with advice.... Elevated Alpha-Feto protein after Amnio...

[BritinUSA]

Hello - I am hoping there are some of you out there who have experienced something similar with a positive outcome. After testing high for Trisomy 18 after a week 16 quad screen, I had to go for an Amnio. Full results for the Amnio just came back and the good news is there are no chromosomal abnormalities, so everything with Trisomy 18, Downs Syndrome etc is normal. What the Amnio has revealed however are elevated levels of Alpha-Feto protein (3 multiples of the median) which indicate a risk of neural tube defects, such as spina bifida. My Obgyn wants me to have a level 2 ultra-sound to investigate further. I am out of my mind with worry as I can't find anything that would indicate high Alpha Feto protein levels without there being a problem. So, no false positive so to speak. I'm at 18 + 2 and this little one is so wanted after years of trying and eventually IVF. I'm not dealing with the testing / waiting at all well am finding it difficult to cope. In fact, I left a training course early this afternoon because I couldn't focus on the material. I
hope the testing terms are the same in the UK, I'm English, but live in the US and have found tremendous support from the Mumsnet site. Any thoughts or experiences you can share would be much, much appreciated.

I hope someone comes to you soon. Just bumping you up list. I have had experience of 'waiting' and not 'knowing' and feel for you. Someone with knowledge will come soon..

Anyone able to offer informative support to BritainUSA?

Thanks for looking out for me ladies and asking as well!

I just know how debilitating waiting for results is. My situation was different to yours so I have no useful advise. I do know when I was waiting for cvs test results I just wanted to hibernate and found it hard to function. It must be so hard being given good news re amnio results and then something else to worry about! Nothing useful to say but thinking of you. xx

I don't know if this is of any help to you but I have a friend in her 40s with spina bifida, she is a mum to 3 and an assistant head teacher, x

From wiki:

Maternal testing for fetal screening

Abnormally elevated AFP in the serum of a pregnant woman can have one or more of these sources:

a problem with the fetus
a problem with the placenta
a tumor or liver disease in the woman
a normally elevated AFP in the fetus or woman (some people naturally have very high AFP)

en.wikipedia.org/wiki/Raised_alphafetoprotein_level

And further down on the same page:

75% of AF AFP test results in the range 2.0 to 4.9 MoM are false positives: the baby is normal.

With a MoM of 3 you are well within this range

I have no idea how old you are, but I've heard a LOT of older mothers have higher AFP which means nothing, but it makes them far more likely to screen positive for things.

Ladies - I can't thank all of you enough for your good thoughts, empathy and LionRock, the research you did on my behalf. I continue to look on the web, but your post information is by far the most helpful.

OfftoNarnia - thanks for sharing how you felt whilst waiting for your results. I feel EXACTLY the same. I feel so out of control (and for someone who is usually 'in control') this feeling adds to the frustration. I usually find some kind of action helps, but I am at the mercy of the scheduling assistants at the hospital re the Level 2 Ultrasound. I've no idea how my case stacks up against other women (I feel for them) who are going through exactly the same thing right now.

Thanks again and I'll keep you posted. It helps so much to be able to share and most importantly feel heard.