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Abnormal AFP (Alpha-Fetoprotein) Test in Pregnancy ~ Should You Worry?

Updated on July 7, 2012

NOTE:  PLEASE READ ENTIRE ARTICLE BEFORE DRAWING ANY CONCLUSIONS!

If you're reading this hub chances are that you've received unexpected results on an afp test or you know someone that has. You're seeking answers on what that could mean. Maybe you've been told that your baby is at risk for Down's syndrome and you feel like your world is spinning out of control. No doubt, multiple questions are clouding your mind at this very moment as you are embarking on your quest for answers. (What is an alpha-fetoprotein [afp] test)?

You may have heard the phrase that experience is the best teacher. Well, having recently gone through this situation myself, I think the best way for me to cover this topic is to share my own experience.

My doctor would give the option to sign a paper that I could refuse this test if I wanted. In the past, that is exactly what I did. I knew that if a problem was found with my baby I would love and accept him no matter what. However, for some reason, I didn't sign the paper this time around and I was issued the test.

About a week or so later, the nurse from my doctor's office gave me a call and told me that there had been an abnormality on my lab and that they wanted to set me up with a genetic specialist to perform further testing. I had so many questions but didn't know how to ask them. My world was spinning faster than I could think so I just wrote down the info for the specialist and hung up. My first instinct was to call my mom but it was her 50th birthday and we were all getting ready to go out of town to a nice restaurant to celebrate and I didn't want to spoil that for her. So, I kept it inside until I was able to tell my husband when he got home. My husband is a major optimist but don't comment a lot on how he feels about anything...good or bad. So at that moment I probably would have had about as much luck telling a brick wall. I know now that he must have been feeling the same thing that I was but he didn't want to upset me further. So instead, he tried to act like all was well.

After the birthday was over and everything was settling back down to "normal," I called my mom and asked her to meet me for lunch. When we got there I told her what I'd been told but admitted that I didn't totally understand what was going on. She suggested calling the doctor's office back and asking more questions. I didn't feel up to it so I just called them up and told the receptionist what was going on and asked her to talk to my mom. That was mistake number 1. I should have asked for the nurse or the doctor. But I didn't. I went to the restroom while Mom was on the phone and when I came back she looked like she had been drug by a semi.


"Didn't you understand anything your nurse said?" she asked. By the look on her face I guessed that I hadn't. I had already had an ultrasound and I knew my baby was a boy so my mom then told me that the receptionist looked at my chart and said that my little guy was positive for Down's syndrome.

The weight of the world came crashing down on my head at that moment and stunned me to the point where I couldn't talk or cry. I was just numb. Plain and simple. When the emotions did come they flooded all at once. My mom called my husband and had him to come to the place where we were so she could talk to him. After he got there and we told him he still didn't let himself break. As a matter of fact, he hardly said anything at all...just listened. There was no holding back for me now. Tears came. Frustration. Grief. Confusion with such a strong maternal love and acceptance that I couldn't really sort out what I was feeling at all. I was also deeply worried about his health since I'd heard that Down's babies often have heart problems. I was already so much in love with this little guy and NOTHING was going to change that. The time following I would take turns with these emotions over and over. My motherly instinct kicked in and I wanted to protect my baby so bad. Protect him from people. I didn't want anyone looking and staring. I wanted him to be accepted and loved. I knew he was wonderful and special I just had to make the world see it. He was a gift from God.

My mom and me talked of others that we knew with Down's and how special they were. I had accepted the fact that my baby had indeed been diagnosed when I suddenly remembered something that I had read. I read that the test that I had taken, the AFP test, was a "screening test" not a "diagnostic test." So I mentioned that to my mom and she called the doctor's office back. She filled them in on my roller coaster status and about half hour later my doctor called me personally. He then told me that this was indeed just a screening test and the specialist would be the one doing the diagnosing if necessary and that I didn't need to worry until I saw him.

Well, that thrust some hope into the picture but at the same time I didn't want the hope if I was needing to accept facts. It was a painful and long 2 weeks or so before my husband and I finally went to see the specialist.

When we arrived we were called back by the nurse who was upbeat and happy which did a lot to calm our nerves. She sat us at a table and asked us what we had been told. I told her that we had actually been told at one point that our baby was positive for Down's. She seemed to be familiar with what we were feeling and set out to explain. She pulled out my chart and after some fancy mumbo jumbo told to us the bottom line was that our baby was only at 1/2% risk of having Down's syndrome and there was a 99.5% chance that everything would be fine. She explained that testing was only slightly out of range and that it was only enough to get us there basically. I later learned that a number of things can make it out of range. It was true...you really shouldn't draw any conclusions by the screening test.

Honestly, I felt somewhat miffed that there was such a small chance and we were allowed to worry like that. (Let alone actually being told it as a fact).

However, we went in for a lovely 4D ultrasound as the specialist checked out the baby which turned out to be perfectly healthy. I have posted a picture of him. I know he would be beautiful to me no matter if the results were different, but I think they put moms through a lot of unnecessary worry.

So, in answer to the question....No, you should NOT worry. Just get the facts before you draw any conclusions.

My little guy.  He was only about a week old here.
My little guy. He was only about a week old here.
working

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