Anyone else opt out of amnio and that type of testing?

GaBeekeeper

So far my DR has not discussed any type of testing to find out if the babies have down syndrome, etc. I don't think I want to know, b/c I know the type of person that I am , that I would just worry and it wouldn't be good on the babies, if I found out something like that.

I couldn't terminate one of the babies for that anyway, so I don't think I will do them anyway. I feel strongly that my babies are healthy and strong and that this isn't an issue. But with my lovely age of 40, it will come up and be suggested at some point.

Did any of you over 35 moms opt of of this type of testing?

Zen

I opted in but know of absolutely no one else that had an amnio.
You can opt out and rest assured that you are in good company!

yfnr

I am not over 35 but I would have had an amnio if an US showed potential markers ONLY so that I could be better prepared for that child's arrival. I would not have terminated based on any results.

Zen I know a TON of people who had amnio's and several who were pretty open about the fact that they would terminate if something was found (not that that is what you said you would do). I think in the SMBC community more mom's so opt for an amnio because they either want the preparation...or know that as a single mom they couldn't handle the stress and challenge of a special needs child.

mommylove

I am not over 35, but we did opt out of the testing, especially the amnio (I felt it was far too invasive)...we were of the same opinion as it seems you are, we would not have chosen to terminate any pregnancy if we found out about downs syndrome, etc.

Good luck with your decisions regarding your little ones...there will be plenty during and after pregnancy also...you really just have to go with your gut.

coryandamanda

I am considered advanced maternal age - I turn 35 a month and day before my due date. We did some of the testing. We wouldn't terminate no matter the results, but I wouldn't mind knowing there could be a chance of Down's, etc. ahead of time just to be mentally prepared. We were given the option of the referral to a perinatologist but opted against it. We are just going with our regular midwife/OB with just the regular prenatal appts.

jody

I was over 35 for my second one, and I opted out. =o)

Good luck on your decision.

ann1971

I was 37 and opted out of testing. Even though I am a SMBC I wasn't going to terminate no matter what..so to me it didn't make a difference.

Hopeful2010

I was not 35 with my previous pregnancies but my next one I will be as I am now almost 38. I opted out previously and I will for future also. I remember asking my dr if I wanted the testing and I said no, he gave me a look and said are you sure? I replied with it doesn't matter to me, either way, the child is mine and the outcome of the tests will not change my choice for an outcome. Now that is just my opinion, I do not judge anyone for their choice in this matter.

If you are just curious to prepare, then you should ask yourself why you wouldn't want to do the testing. If you feel no need to prepare or it just doesn't matter, then maybe choose not to do the invasive testing??

cocobay

I am not over 35 but when the doctor asked me did I want any of these test done, I asked him what his professional opinion was on wether to go for it or opt out. He said there would be no way that they could prevent anything from happening or make the circumstances better and I would only stress if I found something out. He said he never suggest that it's a good idea but makes it available for all of his patients. We opted out. If Bronx is born with a genetic disorder or syndrome then we will deal with it after his birth and do what ever we have to do for his development. There is nothing we can do about it now and I don't think I could ever prepare myself for something like that.

Shanny

I turned 36 during my pregnancy and it was never even discussed since I used midwives and a birthing center. IF I have another baby I will definitely be over 40 and still would not plan to do any testing. Like everyone has said, it is one of many very difficult parenting decisions to come so do your research, talk with people you trust and go with your gut.

Charmed

I didn't read all of the replies and I am not over 35, but we didn't have the testing either. Since the amnio poses a potential miscarriage risk, I couldn't do it. I just didn't want anything to jeopordize my pregnancy and we wouldn't have considered aborting, so we just skipped the tests.

GaBeekeeper

Thank you all for your replies. I guess when I go to the specialist next month, they might bring up the testing. So far nothing has been mentioned at my DR's.

On one hand I see a good reason to know in advance to be prepared, but I don't want to risk having something happen and then I would blame the amnio for it.
I have always said that I just did not want any testing, and I'm probably going to stick with it.

But thank you all so much for sharing your opinions, and I respect each and everyone's view on this.

Kari

I had the trisomy (?) testing done, which is a blood test looking for markers of issues, but not the amnio. I was concerned about the risk of miscarriage, and really felt that "you get what you get." I was 35 at the time.

PtownMoms

I had the early screening done...the nt scan thing. But mostly because we didn't want to wait to week 20 to have an ultrasound. My doctor mentioned the amnio (just that it was an option)...I honestly didn't even think about it.

jenoglv

I had the early testing done for the same reasons as Carrie.

lolabel

I had the marker tests done, but when they looked good, I opted out of the amnio. I was 38 at the time. If the markers had been worrying, I would have done amnio with the express thought of terminating if there was a problem. My friends who would not terminate for religious reasons etc. all opted out of amnios.

texas4

Lori was 39+ when she conceived and when the first US revealed twins we were told we needed to see a genetic counselor and a perinatologist. We got the info on all the available tests, but before we even read it, I asked what would happen if we decided not to do any of them and the doc said that was fine. With multiples you are guaranteed to have more US done so the babies will be followed closely, he said. So we did the US NT test, but that was it. All the other tests were not conclusive by themselves. And the amnio we felt was too risky. We knew we would not terminate.

It just so happened a coworker of mine had a pregnant sister that did have an amnio at 37 weeks (I forget why). Her water broke in the elevator when she was leaving her appt. Probably a coincidence, but who knows?

Goobie

I opted out of everything but my own blood tests and vaginal swabs. I will have one ultrasound (on June 21st!) just to measure babe, bvut otherwise no testing done. Nothing changes how we feel about this memeber of our family.

Hadley

*please read*

the main reason for finding out if your baby carries an anomalies is not to terminate - it is so there can be preparations for what kind of staff/hospital is required for the delivery and antenatal care.

Many babies born with Down Syndrome have a heart defect. I have two friends who have children with Down Syndrome, and both had extensive open heart surgeries after birth. If the babies had been born in a birthing center etc they would not have survived.

Knowing more about your baby's medical needs before birth allows for planning on what hospital is the best to deliver in - does it have a level II NICU/PICU, do you need a kidney specialist on call, cardiology, etc.

palegreen

We opted out mostly due to the accuracy rate of the tests. If the tests were more accurate, we probably would have had them done, but I didn't see the point of causing unnecessary worry for a test with low accuracy. I would have opted out of an amnio for sure at such an early gestation. If it came down to being concerned about which medical professionals needed to be on hand at the birth, I'd wait to do the amnio when the babies were more fully developed.

EMG_REL

We opted out because of the increased risk for miscarriage.

Goobie

Hadley wrote:

*please read*

the main reason for finding out if your baby carries an anomalies is not to terminate - it is so there can be preparations for what kind of staff/hospital is required for the delivery and antenatal care.
Knowing more about your baby's medical needs before birth allows for planning on what hospital is the best to deliver in - does it have a level II NICU/PICU, do you need a kidney specialist on call, cardiology, etc.

This is a very valid point... I maybe should have added with my responce that I live in a small town and would have to travel 4 hours to have an amnio done - we have our own nicu, but don't do any of the testing in this town. There is also only one option for hopsital deliveries, but it is the regional hopsital, so well equipped (and with a helipad, just in case)

indigoscot

we opted out for me (dp is not ama) because we personally know 3 people (my own sister is one) who had false positives on the blood tests. my sister had the amnio and everything was fine - that baby is now a happy and healthy 2.5 year old. the other 2 people were told they should terminate. those babies (both girls) are just fine. i knew i would just freak out over bad results so we declined.

g

Hadley

indigoscot wrote:

we opted out for me (dp is not ama) because we personally know 3 people (my own sister is one) who had false positives on the blood tests. my sister had the amnio and everything was fine - that baby is now a happy and healthy 2.5 year old. the other 2 people were told they should terminate. those babies (both girls) are just fine. i knew i would just freak out over bad results so we declined.

g

The blood test is a screening. It screens for who is more at risk, considering both a high and a low level (both have meaning). There is no such thing as a "false positive" because it is saying whether your risk level is higher or not. Women who are at a higher risk group can then decide on further (more invasive) testing.

as far as your story that people you know with "false positives" were told they should terminate? I'm sorry but this is bogus. Any Dr. is going to tell you the AFP screen just tells what your risk group is, it does NOT tell you if you if the baby is affected. They will not tell you to terminate based on the screening. What they will tell you is that you are at higher risk depending on your abnormally low or abnormally high level, and they would then offer additional testing that would be covered by your insurance since your risk level changed.

Even when anomalies are found for certain via amnio I I find it highly unlikely any doctor would suggest anyone "should terminate."

I caution people to get more informed information from your health care provider before you make these decisions.


a LOW AFP level in your blood indicates a higher risk for Down Syndrome

a HIGH AFP level can show higher risk for neural tube defects, abdominal wall defects, esophageal and duodenal atresia, some renal and urinary tract anomalies, turner syndrome, some low birth weight fetuses, and placental complications. Some of these things will not show up on ultrasound screenings, by the way.

In particular, in women with high AFP levels the risk of placental abruption is higher... where the placenta may separate from the uterine wall. This is life threatening for the baby and the mother.

Hadley

FYI....

In my case, the quad screen result showed that I was at risk - and I chose to have my baby screened further. No congential conditions were found upon full diagnostic testing. But they kept looking into it and a problem was found with my placenta, which is one of the things a high AFP level flags for.

I went on to have a placental abruption later in the pregnancy. The AFP was a warning sign for us and we were able to be prepared based on having the full information. I did deliver with a midwife but I did so at a hospital with a NICU. ((It ended up not being a good decision though because within hours my baby had to be emergency airlifted to a bigger hospital with a more equipped NICU - and there I was, stuck at the hospital I'd given birth at... Trust me, even though your baby can be airlifted... you don't want to be stuck at an entirely different hospital. It will take at least 24 hours for them to transfer you))

More information is just that - more information. It doesn't mean you don't want to keep the baby!

twicejess

I am 33 and I had the NT scan because my doctor's office just does it...and I didn't think it was at all invasive. I didn't have the quad screen or anything though, no point.

indigoscot

hadley you are entitled to your opinion of course. these are people we know well and trust so why would they lie to us about what the doctor told them?

the false positive bullshit that says over 35 + elevated numbers = possible issue put the fear of god into my sister and had her freaked the hell out that her baby had something seriously wrong. i'm glad in your case it saved your baby's life but i do honestly think that any testing with this wide of a range of incorrect results should be explained in better detail to pregnant women before they make the decision to have it. in my sister's case the nhs just gave it as a matter of course without any explanation.

g

Hadley

kitty wrote:

Haley
I was present when my co-worker got the call from her OB doctor after having JUST the blood screening and the doctor called her at work and said Your baby has down syndrom... I need you to come in. NOT theres markers or anything but Your baby HAS down syndrom.

You can beleive that all doctors say everything 100% correct and its not true they are humans and make errors too!

As for being prepared, thats a yes and a no... the amnio its self has a 10% chance of a miscarriage occurring and before having one they actually have you sign documents to that fact.

So as the pregnant person you need to look at all of the risk and decide for yourself which one works best for you.

By the way I had a negative afb and still gave birth to a still born and a premature... so having positives does not indicate you will have problems later on with your pregnancy.

there is no such thing as a "negative" or "positive" AFP. There is normal level and then there is concern for both a high level and a low level. It is not a negative/positive test.

People need to understand what these tests actually are before getting all dramatic

Again, I highly doubt a physician would tell a mother that her baby HAS down syndrome from a low or high AFP level, because there are many other reasons for a low or high reading. I can't speak to what a doctor supposedly told your co-worker over the phone - but if you want to read published information on what the AFP test does indicates I can provide many links. If you prefer to go by what a friend of a friend said, well that is your perogative

GaBeekeeper

I posted this question for advice not for a debate. Hadley, it is not your place to say that you doubt anything that Kitty or Indigoscot has said here. I have known both ladies on here for a long time and I do not believe that they would say that unless it was absolutely told to them. And frankly, I don't like your tone with them about this subject.

And as far as reading published information on the AFP, then I suggest you go to http://pregnancyandbaby.sheknows.com/pregnancy/baby/Understanding-the-AFP-test-4450.htm Because there it clearly says AND I QUOTE
"Positive/abnormal AFP
Once a patient receives an abnormal or positive AFP result they are then advised to schedule an appointment to see a genetic counselor, a health professional with a specialized graduate degree and experience in medical genetics and counseling." SO AS FAR AS YOU WERE SAYING THERE IS NO SUCH THING AS A "NEGATIVE" OR A "POSITIVE" AFP,, WELL,, I FOUND THE PHRASE "POSITIVE AFP" USED!!!!!
And if you go to that link you will also see references to False Positives.

And I am pregnant with twins, and you know what else I have known about the AFP?

" A high level of AFP can be an indication of a neural tube defect such as spina bifida. However, high levels of AFP can also indicate that the mother is further along in her pregnancy than realized and her due date needs to be recalculated. A high AFP could also mean the mother is carrying twins, according to Kaiser Permanente."

So, it can be inconclusive for women with twins.

And you did make a valid point about finding out about issues before the baby is born so the hospital will know how to be prepared. Well, I was making references to AMNIO'S and other invasive type of testing. I am going to a Perinatologist so even tho I will refuse the amnio, I will have several in depth ultrasounds that will make sure the babies are fine. They will be checking their hearts and their growth rates.

And we are not "getting all dramatic" about these test. PREGNANT women will get emotional about any type of testing done to their unborn child and you calling them dramatic just isn't very nice.

mel

An amnio will give definite results - maybe this is what some of the friends or family members had? I had the NT scan but opted out of the bloodwork because it is not reliable with multiples and because it only indicated risk levels. I refused an amnio because of the increased risk of miscarriage - my pregnancy was already high risk and I chose not to increase that risk. since I wouldn't have an amnio, I know myself well enough to know I would have driven myself insane with anxiety over blood levels, even though I knew they could be unusual with multiples anyway.

Zen

There are definitely doctors who will recommend termination. Not maliciously. But thinking they are representing the wishes and needs of their patient. But to get back to the decision on whether to have the test, the real decision is whether it's worth the risk. There is a risk of miscarriage. If you already know that you'll carry no matter what, and you're not high risk for genetic anomalies, why take the risk? Like I said before, I don't know anyone else who's had an amnio.

With regard to the nuchal translucency (NT) ultrasound, many go that route. When I was pregnant my doctor opted not to send me for that because of the incidences of high false positives. But we already knew that I was going to have an amnio so there was no need to have the possible extra stress of the NT results. Fast forward 2 years and his office now routinely sends all their maternity patients for the NT scan. Not sure if it's a sign of the times but doctors like tests. And if they're non-invasive, so much the better.

You're pregnant with twins. My personal opinion? Skip the amnio, let them monitor you with ultrasounds, and tell us when you know if they're boys, girls, or both!