My AFP test was abnormal..now for more test!!! - Mothering Forums

 
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#1 of 10 Old 07-19-2004, 08:29 PM - Thread Starter
 
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I don't know what to think with this baby. This is #4 for me and already we have had a roller coaster ride. My Cystic Fibrosis test was positive when it had never been before and hubby was negative so that worked out fine anyway. With that one you need both parents carriers to have the chance of a CF child. Now my AFP test was abnormal and I go back in tomorrow for my next appt. and they will perform more bloodwork. She said it could very well be a false positive but it is still so nerve racking. Anyone else have a false positive here with current baby or previous children? I guess with more blood tests I will wait it out, and if that is still abnormal then to the more in-depth ultrasound but I can't see having all those other test run with the risks involved. I just don't know.
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#2 of 10 Old 07-19-2004, 08:33 PM
 
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With an abnormal AFP they will probably want to do an amnio. There is an extremely HIGH rate of false positives on the AFP. I believe that out of 10 women who get a positive only 1 has a baby that is unwell.
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#3 of 10 Old 07-19-2004, 08:35 PM
 
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Oh, I am SO sorry. I hate the AFP test because the incidence of false positives is very frequent, actually. It's a notoriously unreliable test, not the least reason for which is that doctors calculate gestational age based on LMP, but that's not always accurate -- and if the dates are wrong, the AFP will be too, even if it's only off by a few days.

That happened to us. Long story short: I knew we were 15 weeks along; my Dr. (may he come back in another life as one of his OWN PATIENTS... : ) said she was 17. The AFP said she had a high chance of having Down syndrome.

It felt like getting kicked in the uterus. Over the next few days until the level 3 ultrasound, I agonized over biparietal diameters, nuchal folds, you name it -- any indicator of Down syndrome I could find. I discovered that even WITH expert technicians running the U/S machine, they miss 13% of all Downs cases.

With the utmost respect to parents of special needs children, we knew we were not special parents. We finally decided to have an amnio to determine once and for all if there were any chromosomal abnormalities, because an amnio will indeed tell you that. An u/s will not.

I don't know what your feeling is about whether you would abort a pregnancy if your child had serious developmental problems, and that consideration will be crucial to what you decide to do.

In the meantime,


Quote:
Originally Posted by angelamclamb
I don't know what to think with this baby. This is #4 for me and already we have had a roller coaster ride. My Cystic Fibrosis test was positive when it had never been before and hubby was negative so that worked out fine anyway. With that one you need both parents carriers to have the chance of a CF child. Now my AFP test was abnormal and I go back in tomorrow for my next appt. and they will perform more bloodwork. She said it could very well be a false positive but it is still so nerve racking. Anyone else have a false positive here with current baby or previous children? I guess with more blood tests I will wait it out, and if that is still abnormal then to the more in-depth ultrasound but I can't see having all those other test run with the risks involved. I just don't know.
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#4 of 10 Old 07-19-2004, 08:54 PM
 
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I've never had the AFP test, but I do know it is not very reliable.

Just curious why you've had more than one CF test, unless it was because the test (the technology) changed. The test is to show you are a carrier, and your status as a carrier will not change. So if you've been getting the same type of test each pregnancy, including this one, I'd wonder if you had a false CF positive.

Will more testing up your anxiety or help alleve it regardless of the results? It's hard not to focus on the results of a positive test, especially when it opens the doors to so many unknowns. Just know AFP tests can be and frequently are, wrong.
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#5 of 10 Old 07-19-2004, 09:09 PM
 
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We just went through this last month. It was a very stressful time, but it turned out that all was fine with the baby. I had an amnio in the end, to be sure, but you have to follow your heart with what tests you decide to go for.

The likelihood is that it is a false positive - most are. It is not a test but gives you a probability. All sorts of things can skew the results - in my case I'm sure it was mixed up due dates.

I did have a FISH test done along with the amnio, it cost us as insurance didnt cover it, but it gave results in three days, rather than wait two weeks. For me it was worth the reduction of stress. Ask your doctor about what is available.

IF you want to pm me, please do. Try to take care of yourself and relax - easier said than done. The odds are truly on your side.
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#6 of 10 Old 07-19-2004, 10:03 PM - Thread Starter
 
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As for the CF test that was positive they now tell me it had to have been a false positive or it would have shown up in other pregnancies but it was still scary. I guess I was just wondering others experiences with the AFP test and how accurate it was. I guess if I were to have a special needs child, I would rather be prepared mentally and emotionally for his arrival and now what I have to dea with. I would love my children regardless. I truly appreciate your responses I already feel better knowing that there are so many false positives. Thanks so much guys I knew you would help!
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#7 of 10 Old 07-20-2004, 02:03 PM
 
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I have no real experience with the AFP, but I have heard (like most people who have posted) that is unreliable. I just wanted to voice my support and tell you to stay strong.

Mom to Iris and Henry
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#8 of 10 Old 07-20-2004, 06:18 PM
 
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It isn't so much that the AFP is unreliable, it is more that it is misinterpreted. The AFP doesn't give you a "positive" or a "negative", it gives you a probability. As in, according to what we found in the blood we drew, you have a 1:20 chance that your baby has Down's syndrome (or whatever marker they were looking at). Whether it is called a "positive" or not depends on a great many things - was it a greater risk than general for a woman of your age with your history? Generally, further ultrasound testing will be done if this is the case - but amnio shouldn't be recommended unless the risk of having the disease according to the AFP is greater than the risk of complications from the amnio (this doesn't stop them from mentioning it though) or the ultrasound shows something really fishy.

Did your Dr. not give you your risk level, just that your result was "abnormal"? If so, you really deserve a more full explanation, especially since you are going to have to decide whether you want more tests or not - there is every possibility that "normal" for your age is 1:450 and your test pulled up 1:250, which is still very low compared to other age groups. And of course, if your dates are at all off the numbers will change - the test will show higher levels of risk the later into pregnancy you are (compared to how they computed it).

Mama, homeschooler, midwife. DD (13yo), DS (11yo), DD (8yo), DD (3yo), somebody new coming in November 2013.

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#9 of 10 Old 07-20-2004, 11:23 PM
 
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Niki, you took the words right out of my mouth! You rock my well informed sister! This SCREENING is not as bad as it's made out to be and can be extremely helpful. The factor that makes it scary is lack of education by our health care providers. Knowing that it's not a test is the first step in that.

FWIW, Mine with my first pregnancy was negative (meaning that my risk ration was an acceptable for my stats), with my second child is was 1: 30 something. She has a chromosomal abnormality that WAS NOT indicated by the amnio I had. In our case the U/S proved far more helpful than the amnio. She was diagnosed 2 weeks after birth but her life was saved (by God) and the U/S the peri did weekly. She was taken at 33 weeks in distress.

This time I had the screens and they were A OK! YAYAY!!!! I also had a level 2 U/S yesterday and all looks pretty normal so far.

Being prepared for Meg helped me alot. She is my JOY! (and occasionally my vice) but NOT an accident!
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#10 of 10 Old 07-21-2004, 08:58 AM
 
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Wanted to add that my OB said that the AFP test always comes back positive if you're over 35, so we decided to skip it. I guess the "positive" comes from the risk comparison numbers that nikirj just said...your risk and your tested value would be closer, right? Pre-coffee, hope this makes sense.

mama to DS 9 and DD 5 and
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