Maternal AFP UPDATE

[maxaroni]

I mentioned on another thread that our daughter in law had a high AFP level with the blood test. Her doctor said it “may” be an indication of spina bifida and ordered a specialized scan of baby. She had the scan and all looks good for our grandson, no abnormalities found. A huge relief but it’s not a guarantee, of course. Our son and daughter in law were told that to be 100% sure, they would recommend an amniocentesIs. They are leaning to not having the amino done as there is a small risk of miscarriage, their insurance won’t cover it and it won’t change the course of the pregnancy. I did have an amino done when pregnant with my son but this is a highly difficult decsion with no right or wrong answer. My question is, has anyone had a high AFP level with no discernible reason? First time grandma is nervous!

 

[Christine]

I mentioned on another thread that our daughter in law had a high AFP level with the blood test. Her doctor said it “may” be an indication of spina bifida and ordered a specialized scan of baby. She had the scan and all looks good for our grandson, no abnormalities found. A huge relief but it’s not a guarantee, of course. Our son and daughter in law were told that to be 100% sure, they would recommend an amniocentesIs. They are leaning to not having the amino done as there is a small risk of miscarriage, their insurance won’t cover it and it won’t change the course of the pregnancy. I did have an amino done when pregnant with my son but this is a highly difficult decsion with no right or wrong answer. My question is, has anyone had a high AFP level with no discernible reason? First time grandma is nervous!

Well it was over 30 years ago, but yes, I had this.

What it boiled down to was the nurse in my OB's office time and again miscalculated my weeks of pregnancy by about 2 weeks. I kept pointing it out. Apparently acceptable levels also match up to weeks of pregnancy and the farther along you are the higher those levels go but if they input the due date incorrectly, you can get an off reading. I was pissed.

Anyway, the scans weren't sophisticated then so I had to have an amnio and genetic counseling. Everything turned out fine.

 

[maxaroni]

Well it was over 30 years ago, but yes, I had this.

What it boiled down to was the nurse in my OB's office time and again miscalculated my weeks of pregnancy by about 2 weeks. I kept pointing it out. Apparently acceptable levels also match up to weeks of pregnancy and the farther along you are the higher those levels go but if they input the due date incorrectly, you can get an off reading. I was pissed.

Anyway, the scans weren't sophisticated then so I had to have an amnio and genetic counseling. Everything turned out fine.

Yes, everything is more sophisticated now, my DS is 31 next month. I had the amino as I was AMA, was suggested to me to have it done. We wanted to be as prepared as we could going into the delivery room. We had known someone that found out some horrific news in the delivery room. They have done carrier testing and NIPT testing (chromosomal disorders) all was good.

 

[Christine]

Yes, everything is more sophisticated now, my DS is 31 next month. I had the amino as I was AMA, was suggested to me to have it done. We wanted to be as prepared as we could going into the delivery room. We had known someone that found out some horrific news in the delivery room. They have done carrier testing and NIPT testing (chromosomal disorders) all was good.

Agree...I was never one who wanted to have significant surprises like that in the delivery room.

 

[bluezy]

This happened to me when I was pregnant with our 3rd child about 25 years ago. I was a mess when I got the phone call. My obgyn sent us to a genetic counselor and we started going over every detail of the pregnancy. Within 30 seconds, the counselor noticed that the due date I gave her was different than the date that was used during the testing. I told her that was probably because the u/s calculated an EDC that was about 2 weeks different than the date calculated using my LMP (and the obgyn was sticking with the LMP date based on my previous pregnancies), so she immediately knew that's what the issue was. When everything was recalculated using the correct EDC, the numbers were perfect (as was our son who was born a few months later). DH and I had already decided that we would only use non-invasive procedures if that meeting with the genetic counselor indicated the need for additional testing. My obgyn ordered another u/s just to ease our minds a little bit more.

I've had a few other friends have a similar thing happen and it was always due to an incorrect date being used in the calculations.

 

[Christine]

This happened to me when I was pregnant with our 3rd child about 25 years ago. I was a mess when I got the phone call. My obgyn sent us to a genetic counselor and we started going over every detail of the pregnancy. Within 30 seconds, the counselor noticed that the due date I gave her was different than the date that was used during the testing. I told her that was probably because the u/s calculated an EDC that was about 2 weeks different than the date calculated using my LMP (and the obgyn was sticking with the LMP date based on my previous pregnancies), so she immediately knew that's what the issue was. When everything was recalculated using the correct EDC, the numbers were perfect (as was our son who was born a few months later). DH and I had already decided that we would only use non-invasive procedures if that meeting with the genetic counselor indicated the need for additional testing. My obgyn ordered another u/s just to ease our minds a little bit more.

I've had a few other friends have a similar thing happen and it was always due to an incorrect date being used in the calculations.

As I posted, same happened to me but I couldn't get anyone to pay me any mind. Infuriating.

 

[Frwinkley]

Yes, everything is more sophisticated now, my DS is 31 next month. I had the amino as I was AMA, was suggested to me to have it done. We wanted to be as prepared as we could going into the delivery room. We had known someone that found out some horrific news in the delivery room. They have done carrier testing and NIPT testing (chromosomal disorders) all was good.

My exact experience 31 years ago as well. I wanted to be as prepared as possible (but did not want to know the sex). All turned out well and my daughter gave birth to our first grandchild (a precious little girl) this past March.

Maxaroni--congrats on becoming a grandma! There is nothing better!

 

[maxaroni]

My exact experience 31 years ago as well. I wanted to be as prepared as possible (but did not want to know the sex). All turned out well and my daughter gave birth to our first grandchild (a precious little girl) this past March.

Maxaroni--congrats on becoming a grandma! There is nothing better!

Same. We didn’t want to know gender. My daughter in law is a huge planner and wanted to know the gender. Congrats to you as well!

 

[Pea-n-Me]

Congratulations on becoming a grandparent! That’s wonderful. I hope everything works out for the best.

I had a situation when I was about 18 or 19 weeks pregnant with twins. I had the genetic screening scan and Baby B, a boy, had some of the markers for Down’s Syndrome. They offered me an amino in order to know for sure, and said that I could terminate Baby B if I chose to, but warned that there was a risk of losing both babies with either of those procedures. I said no, and figured I would just learn to “Go to Holland” if that were the case. But I did worry for the rest of the pregnancy up until the minutes after he was born and I saw him. (I don’t think any one of the other 11 people in that OR were worried about it at all; only me.) It makes it hard to enjoy the celebrations and preparations when something like that happens. I’d be relieved the scan looked ok, too, but it probably still will be a worry. Especially for your DIL.

Sending lots of good wishes and prayers their way.

 

[Gracedis1]

This happened to me. I decided not to get the amino. My daughter was perfect. There are a lot of false positives. It was not worth the risk of the amino for me.

 

[mom2rtk]

Why won't their insurance cover it?

I had a an amnio because of advanced maternal age. I wouldn't have aborted, but was very anxious because of my history of infertility. I just needed to be prepared if there was a problem.

And BTW, my sister had a high AFP and had a healthy baby.

Congrats to them!

 

[maxaroni]

Congratulations on becoming a grandparent! That’s wonderful. I hope everything works out for the best.

I had a situation when I was about 18 or 19 weeks pregnant with twins. I had the genetic screening scan and Baby B, a boy, had some of the markers for Down’s Syndrome. They offered me an amino in order to know for sure, and said that I could terminate Baby B if I chose to, but warned that there was a risk of losing both babies with either of those procedures. I said no, and figured I would just learn to “Go to Holland” if that were the case. But I did worry for the rest of the pregnancy up until the minutes after he was born and I saw him. (I don’t think any one of the other 11 people in that OR were worried about it at all; only me.) It makes it hard to enjoy the celebrations and preparations when something like that happens. I’d be relieved the scan looked ok, too, but it probably still will be a worry. Especially for your DIL.

Sending lots of good wishes and prayers their way.

All scary indeed. I know for grandma, it dampened things as I am a nervous Nelly. It’s as if I was carrying this baby, very nerve wracking. However, we need to remain positive.

Thanks for the prayers.

 

[maxaroni]

This happened to me. I decided not to get the amino. My daughter was perfect. There are a lot of false positives. It was not worth the risk of the amino for me.

Wow. I don’t know anyone else that this has happened to. Happy to hear that your daughter was perfect! It truly is the miracle of life. I remember when we had our son, we couldn’t stop staring at him. We were just amazed that we created this perfect little boy.

 

[maxaroni]

Why won't their insurance cover it?

I had a an amnio because of advanced maternal age. I wouldn't have aborted, but was very anxious because of my history of infertility. I just needed to be prepared if there was a problem.

And BTW, my sister had a high AFP and had a healthy baby.

Congrats to them!

Glad your sisters baby was born healthy.

Insurance has said that due to the fact that this is an optional test, it isn’t covered.

 

[mom2rtk]

Glad your sisters baby was born healthy.

Insurance has said that due to the fact that this is an optional test, it isn’t covered.

That’s crazy. Denying the most definitive test when an abnormal AFP comes back seems wrong.

 

[bluezy]

That’s crazy. Denying the most definitive test when an abnormal AFP comes back seems wrong.

Maybe the insurance company wanted the doctor to do non-invasive, less risky tests before turning to an amnio. I was over 40 years old during my last pregnancy (not the one with the AFP issue). Due to some minor complications, I was sent to a Perinatologist for a consultation. I said I didn't want a "routine" amnio, but if he felt I needed one, I would consider it. He said insurance wouldn't cover it unless all other diagnostic options were inconclusive or showed the need for further testing. We ran some bloodwork and he did a 3-D ultrasound. During that 3-D ultrasound he pointed out numerous things that showed our baby did *not* have any markers for Spina Bifida or Down Syndrome; the brain, heart, and lungs were perfectly formed; and the digestive system looked perfectly normal. Based on that along with the bloodwork looking normal, there was no reason to order an amnio especially since insurance wouldn't cover it based on those test results. That was 18 years ago and I imagine the 3-D ultra sounds are even better now. None of the other women I know who have had elevated AFP levels (as recently as 2 years ago) had an amnio -- they all just had bloodwork repeated and/or a 3-D ultrasound.

So while I don't know the details of the PPs situation and why the insurance company wouldn't cover an amnio, it could simply be because the insurance company is trying to exhaust all of the safer options of testing before putting mom and baby at risk and potentially incurring more expenses if there are complications brought on by the amnio.

 

[Pea-n-Me]

Maybe the insurance company wanted the doctor to do non-invasive, less risky tests before turning to an amnio. I was over 40 years old during my last pregnancy (not the one with the AFP issue). Due to some minor complications, I was sent to a Perinatologist for a consultation. I said I didn't want a "routine" amnio, but if he felt I needed one, I would consider it. He said insurance wouldn't cover it unless all other diagnostic options were inconclusive or showed the need for further testing. We ran some bloodwork and he did a 3-D ultrasound. During that 3-D ultrasound he pointed out numerous things that showed our baby did *not* have any markers for Spina Bifida or Down Syndrome; the brain, heart, and lungs were perfectly formed; and the digestive system looked perfectly normal. Based on that along with the bloodwork looking normal, there was no reason to order an amnio especially since insurance wouldn't cover it based on those test results. That was 18 years ago and I imagine the 3-D ultra sounds are even better now. None of the other women I know who have had elevated AFP levels (as recently as 2 years ago) had an amnio -- they all just had bloodwork repeated and/or a 3-D ultrasound.

So while I don't know the details of the PPs situation and why the insurance company wouldn't cover an amnio, it could simply be because the insurance company is trying to exhaust all of the safer options of testing before putting mom and baby at risk and potentially incurring more expenses if there are complications brought on by the amnio.

I took it that the scan that the OP talked about was that.

 

[TipsyTraveler]

Maybe the insurance company wanted the doctor to do non-invasive, less risky tests before turning to an amnio. I was over 40 years old during my last pregnancy (not the one with the AFP issue). Due to some minor complications, I was sent to a Perinatologist for a consultation. I said I didn't want a "routine" amnio, but if he felt I needed one, I would consider it. He said insurance wouldn't cover it unless all other diagnostic options were inconclusive or showed the need for further testing. We ran some bloodwork and he did a 3-D ultrasound. During that 3-D ultrasound he pointed out numerous things that showed our baby did *not* have any markers for Spina Bifida or Down Syndrome; the brain, heart, and lungs were perfectly formed; and the digestive system looked perfectly normal. Based on that along with the bloodwork looking normal, there was no reason to order an amnio especially since insurance wouldn't cover it based on those test results. That was 18 years ago and I imagine the 3-D ultra sounds are even better now. None of the other women I know who have had elevated AFP levels (as recently as 2 years ago) had an amnio -- they all just had bloodwork repeated and/or a 3-D ultrasound.

So while I don't know the details of the PPs situation and why the insurance company wouldn't cover an amnio, it could simply be because the insurance company is trying to exhaust all of the safer options of testing before putting mom and baby at risk and potentially incurring more expenses if there are complications brought on by the amnio.

This must be something that varies by insurance or has changed with time. I’ve had a CVS procedure done for every pregnancy that survived long enough to allow it. (CVS is similar to amniocentesis but done sooner, taking a piece of placenta for sampling versus amniotic fluid.) I’ve basically showed up to every 8-week confirmation ultrasound requesting a referral for this procedure and only once have I been asked why I wanted it, to which I responded, “because I’m 35.” No further questions asked. Insurance covered every bit of the procedure and testing in full without issue, not just the primary panels but the secondary and tertiary panels as well, some 300+ genetic tests. By the time I was 40+ with my pregnancies, I didn’t have to ask for anything — the doctors were the ones ordering tests out the wazoo.

As far as the risks for those procedures…hmmm… it’s been several years since I’ve brushed up on this, but I’m pretty sure the “1 in 250 ends in miscarriage” statistic that is most often thrown around is based on studies that were done before ultrasound guidance was standard (1980s). Now, the risk is lower. Plus, you have to consider who would be getting these procedures in the first place — women with high risk or suspected high risk pregnancies, which are ultimately more likely to miscarry. So, did the procedure cause the miscarriage or was the miscarriage going to happen anyway?

I doubt you care to get into the weeds with this, but current studies show there’s almost no risk at all with these procedures:

“The procedure-related risks of miscarriage following amniocentesis and CVS are lower than currently quoted to women. The risk appears to be negligible when these interventions were compared to control groups of the same risk profile.”

https://obgyn.onlinelibrary.wiley.com/doi/10.1002/uog.20353

I would guess the insurance company isn’t covering the amnio because the standard follow up for a high AFP is an ultrasound, which has been done and is normal. Maybe the OP’s DIL doesn’t have another qualifying reason for them to cover further testing such as being able to say “because I’m 35.”

 

[maxaroni]

@mom2rtk I know, it’s crazy. However, having the scan done with results showing no issues, she has no other basis to have the amino. I had an amino but recommended due to AMA, plus 31 years ago, mine was covered.

@Pea-n-Me Yes, it was a mini version of the full anatomy ultra sound that they do at 20 weeks. She will have the anatomy scan in 2 weeks. I am sure if anything does show on that one, insurance would cover the amnio.

@TipsyTraveler Yes, it is a very small risk for a miscarriage but when our son and daughter in law were weighing whether or not they would have the Amnio, the did not feel as though they would proceed as insurance wouldn’t pay for it, nothing wrong on the ultrasound and having the anatomy scan in 2 weeks, topping off with the slight risk of miscarriage, they opted as a no. Things may change if the anatomy scan shows something. Daughter in law is at risk of delivering early, which I just found out, so that may have played a part in their decision as well.

Thanks to all that have contributed. This is all so exciting and yet, nerve wracking for this grandma to be.

 

[maxaroni]

Update - Our daughter in law had a scan a few weeks ago and it did not show anything abnormal with baby. Follow up with a genetic counselor & possible amniocentesis, along with the normal 20 week anatomy scan. She couldn’t get an appointment until this Wednesday for the genetic counselor but had the 20 week scan today. Nothing can be seen that anything is abnormal. Spine looks good, brain looks good, skull looks good, along with all an anatomy being where it should be. This doctor seems to think that the high AFP levels are coming from the placenta, not the baby. They did ask what the amino would show, should they decide to do it and they would be able to determine if it is coming from baby or placenta. However, if it is from the placenta, all they would do is monitor her with non stress tests, etc. They will be doing that anyway as she is high risk. So, 99% sure they are sticking with no amniocentesis. Of course, anything can happen and only the amino can be 100% but the doctor is fairly confident it’s the placenta.