High AFP?

[chocolatelove]

Hi everyone,

Our AFP came back as high. I got the scanned test results automatically through the patient portal last night, so haven’t spoken to the doctor yet. We’ve done cell free DNA plus NIPS because of a loss last year plus an early anatomy scan last week because of a loss to a fatal birth anomaly last year. Everything has come back as low risk and the scan looked great - great pics of his spine and brain. Of course, we learned our first baby would be at least critically ill on July 17th and then learned his condition was fatal on July 31st last year, so I am right in the middle of re-living that experience already.

Mentally, I get that this AFP is a screening test and everything may be fine. But that is not helping me sleep tonight. And I was so distracted by trying to google stuff that I wasn’t paying attention to DH when I was supposed to be helping and he fell and injured the knee that he is already in physical therapy for and trying to avoid surgery on. So....he’s hurt and pretty upset about it.

I’m not sure if I am just looking for hair pats or stories when there was a high afp and everything was fine, but I’ll take whatever you got. I just keep thinking that I cannot go through this again.

[stellelinds25]

I'm not sure what AFP is, but wanted to send some hugs and good thoughts. Stay off google and wait to hear from your Dr, you could be worrying yourself for nothing. I can't imagine how you're feeling with the anniversary for your first baby being now, but try and do something relaxing this weekend...hopefully your Dr will call today!

[fairfax]

I’m sorry you’re going through this. Can you call your dr to explain the context and request a call/follow up US right away?

Big hugs!

[chocolatelove]

Thanks, everyone. Apologies for the acronym. AFP is the screening test for Spina Bifida, abdominal wall defects (which was a form of what the first baby had), and other things like pre-eclampsia and restricted fetal growth. I did talk to the doctors this morning, and while not out of the woods entirely, there is great news.

Because of our first baby’s anomaly, we had our early anatomy scan at 16w 6 days last week. Spine and brain looked great, so they already ruled the most severe forms of those birth defects. There could be a less severe form that just isn’t visible yet but should be visible on the 20 week ultrasound (scheduled for Aug 15). And in everything I read, it talked about treatment. The phrases “non-viable” or “not compatible with life” were never used.

In the normal course of practice, we would have done this test, then done the ultrasound to follow up, which would have ruled out most major things and essentially the ultrasound results are more important than the AFP results. I am getting certain things done early because of my history (previous baby and my heart defect), so by the time they get to some normally scheduled tests, we already know more information about me than what these tests provide. Basically, since we already had the early anatomy scan, it was a waste to do this test.

As for the other things, like pre-eclampsia. I am already on the high risk monitoring plan, so we’ll deal with it as it comes. No change to any plans as a result of this test.

It was definitely an emotional 12 hours or so. At one point this morning, before talking to the doctor, my mom yelled at me multiple times “this is not Carson!” (Our first baby). I definitely felt like I was reliving the nightmare from last summer all over again. Thanks for the hugs and response!

[robinsbff]

glad to hear that it seems like good news has developed! hope that things continue to look good!

[fairfax]

I’m so glad there is positive news!