What IS the deal with all the prenatal tests for Down's syndrome?

You can’t? I’d want to know as far in advance so that my wife and I could adequately prepare ourselves.

Labrador Deceiver, the only 100% guarantee is birth. But, the tests I’m doing (neuchal transluscency ultrasound, AFP at 12 and 16 weeks, ultrasound at 20 weeks, echo at 22 weeks) are something like >95% effective at diagnosing. My OB said the only way to be sure is getting the amnio, but it sounds like even that can be inaccurate. My hubby and I are of the same mind–we’d want to know ASAP in order to prepare ourselves. But, we’re really not concerned and are just going along for the ride.

Nava, interesting point–and I figured there had to be certain exceptions. I figure if in all this testing they do find something (particularly the more gnarly somethings) more options are made available. Thankfully, it looks like that’s not something we are facing. Gah…mercifully.

Oh, and I apologize–it’s Harriet the Spry, not Spy. Far more amusing a screenname. Can’t believe I’ve misread it all this time!

My wife had her first child at 34 and second at 36. Especially for the second one, we were offered all kinds of tests that you’ve mentioned to check for Down Syndrome. Other than the standard ultrasound at 20 weeks, we declined them all. I mean, we got all the normal pre-natal care and checkups, but declined amnio or other tests to look for DS.

We figured - first of all, we’re not going to abort this baby even if it does have DS. And since there would be nothing we could do about it, we’d rather just enjoy the pregnancy rather than worry. If the baby was born and had DS, we would deal with it; and if not we would rejoice.

Both our babies (now 3 and 4) are perfectly healthy. At 39, my wife is eager to have another.

Besides the incessant push to get parents to do amnio, I’m flabbergasted that doctors are so dismissive of the risks.

True, the risk of amnio-induced miscarriage is “only” about 0.5%. But think about this number. What other medical test has a 1-in-200 chance of killing a perfectly healthy patient? In fact, what other single thing do we do in our entire lifetime that we have a 1-in-200 chance of not walking away from?

I certainly can’t think of anything. But if you ask your doctor about this side of it, my experience says you’ll get a lot hand-patting reassurances that the risks are minimal. Well, compared to what?

Well, quite a lot of things, medically-speaking - any but the most routine surgeries carry a non-negligable risk (and even routine surgery carries some, though perhaps less than that threshold).

However, a friend of mine was in that 1 in 200 - lost a perfectly healthy baby after an amnio, spent days in the hospital on IV antibiotics, and I never asked but I sure hope she fired that doctor’s ass because infection after a procedure like that suggest to me that something was done very wrong procedurally.

It does bug me that the doctors are pushing all the tests and amnio even in the face of an informed mother-to-be, who is aware of the risks and the likelihood (or not) that the earlier tests are false negatives (I’ve never heard stats relating to how often the nuchal translucency etc. misses a problem, vs. a false positive. It just smacks, when you get right down to it, of profound disrespect for the patient. I think they just have contempt for a patient’s ability to make an informed decision. Of the 3 OBs I dealt with during the 2 pregnancies, 2 of the 3 were utterly disrespectful of me (see reference above where I regret hitting the doctor. Not that I regret hitting her, per se, I just wish I’d done it more than once). The other one, whom I only saw once, interrupted a question I had with a very nasty “Do you have a medical background?”. Bitch.

Infection is definitely a risk, even though it’s unlikely - any invasive procedure introduces a risk of infection. Now, I don’t know the situation with your friend, but I once had a patient (well, someone else’s patient, but I answered the call bell) whose membranes had ruptured after an amnio - this is a known risk. Ruptured membranes in anyone are a massive risk for infection. The doctor may or may not have been negligent, I wouldn’t know, but the shit that can happen is not necessarily a result of negligence.

That said, I wouldn’t do an amnio unless I really needed to know and was going to abort based on the information. It’s just too risky.

In fact, what other single thing do we do in our entire lifetime that we have a 1-in-200 chance of not walking away from?

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Celebrate a birthday?

Congratulations!

And also, sounds like you have really good insurance.

Don’t worry. They’re just maximizing your insurance.

You know you don’t have to take these tests, right?

Only because you’re a copy editor, I’ll mention this should be “hubby and me”. ;)And congratulations on the baby!

Hee, gigi! If I go over my posts with my copy editor’s eye, I’ll lose my mind. As it is, I’m just trying to keep what’s left of my brain from seeping out any further. “Pregnancy brain” can do cruel things to a perfectionist. I actually haven’t been a paid copy editor in over a decade; it’s just that I haven’t been able to fully turn that part off in me. This was interesting when I taught fifth grade–I was very, very demanding when it came to written work. Now that I teach just math and science (sixth grade), I’m no longer going bald from pulling my hair out while grading essays. :wink: Thanks for the congrats!

Hubby and I firmly agreed that there was no way, no how we were doing the amnio (minimal risk or not) unless there was a solid, worrisome reason to. Geez, let’s consider the statistics: at my age, I have less that 0.3% chance of having a Down syndrome infant. The miscarriage rate caused by amnios charizard quoted is 0.5%. That means my odds are greater that I’ll miscarry the baby testing it definitively for Down syndrome than actually having a baby with Down syndrome. Um…pass.

My OB, again, sees no reason for the amnio. It just seems like redundant (and doubly redundant) CYA policy.

Hilarity N. Suze, we know we can turn down the tests, but since they are noninvasive and offer us the opportunity to see our son many more times throughout the pregnancy, we went ahead with them. We also figure it will help rule out other possible problems–the more we test the baby (and get a good close look on ultrasound), the more we see isn’t wrong. I just didn’t realize all of these tests were about Down Syndrome (or at least, seem to be). But, meh. We get to see baby boy grow up from eight weeks on this way.

Would you mind sharing what your syndrome is?

Well they’re also covering their own stuff. If they can prove the doctor kept stressing the patients to get the test there is less claims. Remember you don’t have to be able to win a lawsuit, you just have to get your doctor’s insurance to pay for the settlement

Also even when everything is fine, having a baby is a stress on the family’s household. If an expect mother knows she is going to have a baby with Down’s Syndrome she’ll have time to prepare for it psychologically and to get the special needs of the child attended to long before she takes the baby home from the hospital.

She could be arranging all sorts of things in her pregnancy for when she brings baby home.

Not at all…It’s an autosomal chromosomal disorder called 18q- syndrome. I actually wasn’t told I had it until I was sixteen. I went to Boston hospitals (all Harvard affliated) and they said that I couldn’t POSSIBLY have the syndrome, even thou a karyotype showed that I was missing a bit, and even thou I have about ten billion medical problems, since I do not have any mental retardation. The closest thing I have is a learning disabilty. Even with all my issues most laymen think I’m just hard of hearing. (and althought I grew up very self conscious about it since I have a " deaf voice" I’ve had quite a few people from different times in my life tell me that they never remember that I’m hoh)
I wish doctors would tell potential parents that they really only have the very vaguest idea of how genes or brain differences effect someone. It’s really confsuing and complicated…and not as straightforward as " wittle Smashlie has such and such a disorder and WILL have profound mental retardation. The thing is…most mental retardation doesn’t have a cause…Also genetic disorders make up a very small percentage of the MR caseload.
I actually have a brain difference…the mylientation of a 3-4 month old baby. …and no I have no idea why I am here writing this post, instead of being the stereotypical deaf, blind profoundly MR with a g-tube, trach etc type.

No, it’s a perfect example of people wanting to make an informed decision about something that is solely their business.

This thread has celebrated its 10th birthday already. (Not sure about the fetus in the O.P.)