Abnormal AFP

booksandlace

Hey ladies a few weeks ago my Dr had me do an AFP blood test. I didn't have any first trimester screening or NT scan. I just got a call today that my AFP was abnormal, she specifically said possible positive for Trisomy 21 (downs). 

I know it's not a for sure, especially since no other screening has been done but I'm still worrying. I'm supposed to do an NIPT, I just haven't gotten around to it. I was referred to a clinical geneticist and have an appt for next week.

Has anyone else gone through this and have any reassurance?

sheknows6

@booksandlace I have no personal experience to offer but wanted to offer support and creepy internet hugs

Have you considered doing an amnio? While they are more invasive than a NIPT, they are also conclusively definitive whereas the NIPT is not. I'm sorry you're dealing with this uncertainty. 

mermaidca

@booksandlace I don't have experience but also wanted offer my support.  I hope you get some answers at your appointment.

lyse01

@booksandlace I don’t have experience either but here are more creepy internet hugs. I’d probably get follow up testing done sooner rather than later to limit the amount of time you’re in limbo, but even that is advice primarily meant for people who need certainty (like me). Best wishes for a healthy pregnancy and child!

MRDCle

@booksandlace no experiences to share, but T&Ps. I hope you get some good news soon.

happymoni21

@booksandlace So I think I had the opposite AFP problem as you but I hope it brings some comfort...my not-doctor understanding is that low AFP levels are associated with a higher risk of Down Syndrome (what you are describing). I had high AFP levels which are associated with a higher risk of Spina Bifida and other neural tube defects. 

Know that AFP levels are just a screening tool and they have a high rate of false positives. There is some research to show that while it is a useful tool at the population level, it's less helpful for individuals because there is so much normal variability. Essentially it's a good screening tool on average but there are lots of reasons an individual may have abnormal results that are not related to a birth abnormalities.

In my case when we did our anatomy scan it showed a totally healthy baby boy, no neural tube defects. I have a follow-up appointment to rule out some placental issues that are much less severe but I think that they may only apply for high AFP levels, not low.

jayhawkmom4

I have no personal experience with this but I know these tests have a high level of false positives. That is why the doctor said possible positive. Hopefully the follow up testing will give you positive news!!