Amniocentesis & risks

L

Liquorice

Registered User
Can anybody share their knowledge or opinions on having an amniocentesis done? I have just had a Down's blood test and it says I am low risk. I also read, though, that there are sometimes false negatives with the test and that some women choose to have an amniocentesis done anyway to be sure, and also that it can check for many other possible conditions that it would be good to know about.

My husband is against doing it because he thinks that any risk is bad and even if the baby were down's we wouldn't take any action. Intuitively I agree but I also don't think I know enough about the benefits and drawbacks - for example, being able to check for other conditions.

Does anyone have any thoughts or experience they can share?
 
I chose not to have it done as I felt the same as your husband that even if I had a baby with downs syndrome, I would carry to full term and I figured that they would pick that up on the scan anyway around 18 weeks so we would have plenty of time to prepare.

It is a very personal decision though and one you have to be comfortable with so if you feel that you would be better prepared for the birth by having one then it is up to you.

I would maybe suggest a conversation with your doctor to fully discuss all the risks involved.

Good luck with your decision.
 
i didn't have any done for either child.

IF you are low-risk, why take an added risk to the baby? that's just my feeling.

with my second, i didn't have any DS test done at all! i just decided that if the baby had DS, then we would deal with it. even if i'd had the test and it came back high-risk, we would have kept the baby, so it didn't make any sense to risk another test that in the long run wouldn't matter to us.
 
In the states for our first baby (2006) we were quoted a miscarriage risk of 1 in 400, which was riskier than other tests that were showing a 1 in 600 downs risk, so we didn't do it. Our second child's tests came back a bit scarier. Originally 1 in 250, then a test put it at 1 in 150, then an ultrasound put it at 1 in 100 or 1 in 75 (can't remember). We decided to get the test (which was all clear).

A few points I noted:
a) we went to a specialist clinic for the amnio. They took issue with our OB's quote of 1 in 400 and said "that's if you include people giving amnios that shouldn't really be doing so, or is not their main practice area. At a specialist facility, where they do that sort of thing day in day out, the numbers are more like 1 in 1000" (I have no proof of this--this is just what they told us).

b) my wife is Asian and some of the numbers we were relying on were based on a generally US-European, slightly Hispanic or African-American population (the Asian population in the USA is still, statistically, relatively small when it comes to working out health statistics). We did hear a few times that the numbers we were given were slightly 'higher/worse' as they were based on the general US population and not an specific Asian-based statistical model. There was one 'marker' in our ultrasound that another doctor said was so common in Asian women that it shouldn't even be considered as a marker (I know you might not be an Asian female but thought I should mention these points).

There is always a risk. Our OB told us that he had a patient in which the risk was 1 in 2. The result--perfectly fine healthy baby. He also had a patient that tested into 1 in 10,000. Her child was the one that had difficulties.

In the end, you should also ask the question 'what if'. Would it make a difference? The specialist we met said by and large, even with news of downs syndrome, many of the parents in the US still went to term with their children. Comes down to your personal and spiritual beliefs.

Good luck
 
It is indeed a very personal experience. My husband and I also agonised over it for a few weeks, and decided to go through with it even though my OSCAR test put me in the low risk category.

Bear in mind though, that the rate of false positives in an OSCAR are higher than false negatives, so the odds are still on your side. Also, if it is not going to affect what you do afterwards, then there probably isn't much of a point going through with it.

We decided to do it because we wanted to be 100% sure. I don't know what we would've done if it came back abnormal, and am very thankful we never had to make that decision. As I said, this ia a very personal thing, and had to do with what I've seen in my job, husband's personal experiences etc.

The procedure itself was very straight forward - I had it done at Dr Lam's clinic. He uses the ultrasound to find a large pocket of fluid away from the fetus, quickly inserts the needle, draws fluid, and takes the needle out. The entire thing is under ultrasound guidance, and didn't feel more than a pinprick over the tummy.

The main risk really is infection. The rate of complication quoted in literature also includes numbers in the old days where things were not as sterile, ultrasound not as advanced etc. But of course, it is not risk-free.

The test checks for any chormosomal abnormalities, and they give you an answer on trisomy 13,18,21 in a couple of days (rapid test). They then do special tests on the rest and only let you know the result if something is abnormal. You also get to confirm the sex of the fetus.

As someone else said, you will get more information on the likelihood of something being wrong at the structural ultrasound at week 18 as well. Good luck with your decision!
 
I was quoted 1:135 for having downs when I got pregnant with my child (I took another test which was waaaaay lower risk but there was no way of knowing which test was more accurate). Basically I could have had a 1.5% chance of carrying a DS baby. With an amnio, the chance of miscarriage is 1.5-2%. It just didn`t make sense for me, especially since I had no intention of aborting my baby.

I can`t really understand why you would want an amnio since you are low risk anyway. I think that if you go to a good doctor for you 18-20 wk scan, you will learn a lot about the baby, but that depends on whether you would abort your baby or not.

To me 1.5-2% chance is a huuuuge risk to take, especially if it turned out to be a totally healthy baby.

I know you are worried about your baby. I was too, a lot!
But a good ultrasound machine with a good doctor does wonders, in my opinion.
Any Dr. that encourages amnios for cases like yours sounds a little dubious.
 
I had a 1 in 7 risk of downs from oscar test - and decided to do amnio based on that. Went to have the amnio, the doc said it looks like a skeletal problem rather than downs so he recommended not getting an amnio done right then but going to a specialist. I then went to a couple of specialists who recommended getting an amnio but told me that for these issues, the detection rate is MUCH lower since it's a genetic problem rather than a chromosomal problem so we decided against it then. My opinion is that there's no point taking the risk when it's not necessarily going to give you the information then.

I personally would never do an amnio if I was less than 1 in 100 risk for downs - I think that that's the point where the benefits start to outweigh the risks of it... and how horrible would it be if you were that 1 in however many who lost their child as a result of amnio?

Ultrasound can detect a lot these days - and it is safe for the baby too. In my situation (I'm currently 33 weeks pregnant), the baby does have a genetic disease (not Downs) and it's been "tentatively" diagnosed purely on ultrasound. It won't be confirmed until we can do genetic tests after the baby is born though. But I'm ok with that. I have a lot of my experience and my opinions about prenatal testing and a bunch of stuff like that on my blog if you want to read... the link is in my signature line.
 
If you are in low risk why would you want to do it? Remember that age is a factor in those calculations . So if you are over 30 the risk calculated is higher than if you are in your 20 ies. This is because the formula they use gives points for age hence the higher risk indicator. My doc told me that more important than Oscar is the ultrasound that measures the fold. If you go to a doctor who has good equipment they are really able to tell a lot from the scan. Although the risk is low with amnio you still CAN have a miscarriage. This was a risk I wasn't prepared to take but it's a very personal choice. If my results were like 1:10 then I don't know. Its hard to imagine until you actually are in this situation. No honest doctor will advise you to have an amnio if OSCAR risk is low.
 
We have decided definitely not to I think.

It is good to have people's feedback as I find often, in Hong Kong, you are not given that much direction. For example, when they called to give me my results I spoke with the nurse, not the doctor, who said that I was low risk but it was my choice whether I had an amnio or not to be sure. Little conviction that I should or shouldn't or opinion on how low risk I was...
 
I think it depends on the doctor whether or not you get feedback. For both my pregnancies I was low risk and when my doctor explained it to me, she then followed up and said "therefore there is no need to do any further tests". Knowing my doctor well, I think that if I had even suggested doing one with such a low risk, she would have done her best to persuade me not to - though ultimately I know she would respect my wishes.
 
Which doc are you going to? I was so impressed with Dr Patrick Chan in my situation - I had a risk of 1 in 7 but didn't feel pressured either way. We decided to do the amnio and we were there for the appointment - but when he did the pre-amnio scan, he noticed the other issues that implied it may not be Downs or anything like that - and he immediately said he recommended NOT getting the amnio done until we get those issues looked at by a specialist. He could have just done it and got the extra $$ since we were there anyway - but I really felt like the health of our baby was his primary concern - and he was very open and honest about everything. He's such a great doctor in my opinion...
 
I had it done with my 2nd (am 6 months pregnant) and was torn between it. My 12 week scan showed I was a bit higher risk for Down's for my age (but still considered very low). My OB in singapore was basically against it and said there was of course a risk of miscarriage. My ob in the States said, "why won't you have it done if you are at all concerned?" I was losing sleep over it too and it was completely stressing me out. I think you have to ask yourself: what if my baby has Down's? What will I do? That should help dictate your decision.

I had it down at 18 weeks and I would not change anything. I am so glad I did it because after getting the results backed I felt I could celebrate my pregnancy and relax. My OB in the states assured me that the risk for miscarriage was very small. Just make sure you get someone who is very good and who does it daily.
 
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