Positive AFP Spina Bifida Test

My cousin had a positive test as well. She stressed herself out because of it. Her son was born completely fine. Try not to worry. The ultrasound should show more conclusive markers. Until then take it easy.

A close friend of ours had experience with a very similar situation. It was their third child and the results of the amnio reflected their child would be riddled (sp?) with developmental delays and deformities. The doctor even held a consultation with them about considering termination (I don't think he knew they are devout Catholics!!) They decided to put their faith in God and treat this pregnancy as the blessing it was. Turns out, the results were wrong...Yes, WRONG! The child was born with no deformities, no developmental delays and is a thriving, probably 6 year old if my math is correct.
I don't know what your belief/faith system is but for my family, any child regardless of differences is a blessing. Please know this is not at all to be construed as judgement, just where I stand on these matters. If your child does have challenges, God clearly knows you and your SO are up forcaring for an extraordinary child. Refuse to let the joy be stolen from you. What a blessing you have right now. Sending hugs and prayers!

Hi M.,
I believe that the nurse means that your value was 2.87 multiples of the median (MoM). Most labs consider "normal" range to be up to 2.0 or 2.5 MoM. The nurse is correct that this value is borderline and that things are most likely ok (for example, the fetus may simply make slightly more AFP than average or the placenta may allow more AFP to enter your bloodstream than average, which is nothing to worry about). Having said that, the reason that they pay attention to elevations of AFP in the blood is that it could indicate that the fetus has an opening in the body that shouldn't be there (such as with the neural tube or the abdominal wall) or certain other rare problems. Most fetuses with values in your range are fine. They should draw your blood again two weeks after your initial blood draw and do a comprehensive fetal ultrasound. Hopefully the f/u blood test will be within range and the ultrasound will not reveal any concerns. If the u/s and bloodwork fail to give you the reassurance that you'd like, you could also elect to have an amniocentesis (which is much more diagnostic). I hope that everything is ok.

Yes, mine came back high & we were told to expect spina bifida (on a Friday) which caused lots of stress until Monday, when I had the specialized ultrasound. Ultrasound revealed defect not on the back but on the abdomen -- gastroschisis.

We were also told the high number masked Downs, if Downs was the diagnosis, but that did not happen with my daughter.

My daughter recovered fully. There are many outcomes for spina bifida. I know it's hard not to worry (my husband cried) but try to wait & see what the ultrasound shows.

I want to go home (I'm at work) & dig out my number from my file, just to see what it was, so I can be clearer in my response. God bless! Will pray for you & I can totally relate to the worry. Hoping for the very best for you!!

Edited: re: Sunnysm0m -- my doctor was Catholic & she told me if I decided to abort, she would no longer be my doctor. I'm Lutheran; she & I were on the same page, but it just made me more weepy -- I was at work when I got the news. I also had tried for years to have a baby....

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M., your situation sounds exactly like mine 13 years ago. I got that same call that mine was just above the normal range and boy did I freak out. I immediately called my husband who was getting ready to get on a plane and got him all in a panic as well. I had to go in for an amnio a few days later. Waited two weeks which was excruciating only to get a phone call that the lab had done a lung maturity test (at 18 weeks!!!) and that the fluid had expired so I would have to do it all again. I was hysterical. My ob was mortified that this happened and when I had the second amnio he personally delivered it to the lab and put a rush on the results so I got them about 5 days later. Everything was normal. I later learned that this test can be very unreliable and gives many false positives for sb and down syndrom. When I got pregnant the second time with my twin boys just over six years ago, I declined the test. Anyway, just wanted to send a little encouragement that I feel confident everything will be ok. I know it's torture to hear something like this and then wait. As my ob nurse told me, look at it as God teaching you a very valuable lesson in trust and patience :-)

This was the "gift" that I received from my drs. office for my 40th birthday. Unfortunately, thier attitude and demeanor was not an "if" but as if it were a certainty. My husband and I were crushed. Don't get me wrong, we would love this child no differently than any other but, this pregnancy was fraught with stress. The economy has whipped us and we had been told that it just wasn't even possible for us to have more children. SURPRISE!!! When are drs. going to admit they aren't God? Anyway, the ultrasound was inconclusive and doing an amnio was not a option because of health issues I had. It was too risky for me as well as the baby. Each month my dr. office scheduled us for a sonogram and genetic counseling. Each new sonogram just as unclear as the last. My husband and I told our dr. that we would (and we did) inform ourselves as to what to expect, as best we could, for worst case but we weren't giving in so easily. Finally at about 8 months they ruled out sp but could not downs. All the way up to a week before delivery we were having special sonograms to look at his heart. (He wouldn't cooperate with the sono techs when they tried to get pictures each month.)

The big day came and he is fine. I later found out that the test in notoriously inaccurate and that just having a high fever close to the time of conception(which I did) can cause those numbers to be off as well.

It would be wrong to tell you not to worry....you will, and I know a lot of us have posted good outcomes, which should help. My best advice would be to just be informed about all of it....ask questions, questions and more questions. Not just of your dr. but of others (like here on the boards) and in groups of these foundations in your area or the internet. Every case, every child and every family is different.

Yes, had two friends that had the same thing happen to them and after tests in Bham found out that all was just fine. No problems at all and all had healthy babies. After seeing them go thru this, me and my sisters opted out of the preliminary tests because we wouldn't have terminated the pregn. anyway. Hope your test in Bham is very soon so you won't have too many days to think about it. I too would be crazy with over-thinking it. I think waaaay more often than not, all is good.

I do not have experience with this personally but my brother and sister-in-law were told their daughter was "definitely" going to have spina bifida. They drove to specialists in St. Louis, including a geneticist who told them the very worst things that could happen, and in the end, delivered a perfectly fine baby girl.

My sister was told her oldest son was high in some marker for Down syndrome and he is now a 14-year old, ready to start driving.

My own youngest son was tested over and over for Dandy-Walker Malformation (where part of the brain is missing) and I cannot tell you what a horrible, horrible time that was. We went to God though and when he had his six-month MRI the tech commented, "What brain defect? His brain's fine"! And indeed it was. He's in kindergarten, doing just fine.

I said all this to reassure you that doctors are not God. Yes, they are plenty smart and technology can help us in a lot of ways, but it's not perfect. Use the knowledge you gain to educate yourself but don't do anything rash. The baby will yours to love whether it's normal or whether it has a hole in its neck.

K.

I know it is much easier said than done, but please try not to panic. I think everything is going to be just fine. I had an elevated AFP as well and had a risk for spina bifida. After a long road with infertility, miscarriage, etc. I was so happy to be pregnant and out of the 1st trimester, and then got this news around 16 weeks. I freaked out! They wanted me to wait several weeks for the specialized ultrasound at the perinatal clinic, and I was just so upset that I insisted that they do something NOW. Even though they told me they wouldn't be able to tell me "definitively" at that point, they did the special ultrasound and were able to see enough to tell that the spine was fully covered (thus, not spina bifida!).
Anyway, try not to worry, because a LOT of these are false alarms. Get in as soon as you can to ease your mind! Best wishes!

I know that I can say "Don't Worry", but you will anyway. I know several people that this has happened to that when they went for their ultrasound everything was fine AND they gave birth to perfectly healthy babies. Try not to worry.....I'm sure everything is fine!

Like others said, I wouldn't worry until after the ultrasound. I even chose not to have those tests because I know they have such a high rate of being wrong. Even if your child does have a spina bifida, the vast majority of them are hidden (occult) and the only way to tell someone has one is that sometimes they'll have a little cleft between their butt cheeks. The ultrasound will tell you all you need to know and hopefully relieve your fears.