Posted on 05/25/2011 4:11:14 PM PDT by wagglebee
A problem with a relatively easy solution: decline the tests.
That said, I was shocked by the level of pressure placed on us to get the testing.
It probably is not a good idea for a woman with DS to become a mother.
My 16 year old daughter is healthy and “normal”.
I have never understood the point of this very risky testing procedure. There is no medical “cure/treatment” for Downes Syndrome.
You and I (or more pointedly our children) are not medical miracle case histories.
Since no medical intervention will “cure” a child diagnosed with “potential Downes Syndrome” in the womb, and most people who understand the risks of the test will refuse to participate, I believe a certain degree of scorn against those who “feel a need to be tested” is entirely justified.
Yes, I said would you put your child in a group of 200 kids and let someone shoot one of them...it’s the same thing. I’m glad you had a healthy and normal child but we both know we would have loved our children if they did have Downes.
"...I believe a certain degree of scorn against those who 'feel a need to be tested' is entirely justified."
Feel the love. I certainly can, LOL. No wonder the pro-life perspective is seldom considered by couples who are actually experiencing this crisis in their lives, and who seek to clarify their circumstances through further testing.
"Since no medical intervention will 'cure' a child diagnosed with 'potential Downes [sic] Syndrome' in the womb,..."
Cure in the womb? No. Be prepared to make the best of it once the child is born, yes.
Knowledge, wisely used, is power for the good.
"The test itself poses a very high risk to any baby in the womb."
And you have little to fear from having any power associated with knowledge, LOL.
The evidence, from studies conducted in the 1970s, showed that the risk of miscarriage with amniocentesis was generally about 0.5%. That's one-half of one percent. The clinic at which we had the procedure done had a significantly lower rate of miscarriage. Well, we had it done in the mid-1990s, since that was when we were actually pregnant with our oldest, not in the 1970s. By that time, doctors were using newer techniques and technologies to minimize risk. As well, the doctors we went to were among the best in the country.
Even so, it seems unreasonable to call a 0.5% risk a "very high risk."
But more recent research indicates that with the incorporation of newer methods and technologies - such as the ones used by my wife's doctors = risk of miscarriage from amniocentesis has fallen to approximately 0.06%.
You assign very, very little value, it seems, to things that were important for my wife and myself - to know to be able to prepare, to learn, to prepare others, to seek out support.
Risk is inherent in life. We trade off risk of bad outcomes for other goods all the time. The risk in this case was very small and the goods that we gained, either way - whether our son had Down Syndrome or not - were, for us, very great.
sitetest
The amnio test is still conducted in the same manner.
A foreign object pierces the amnio sac (needle is inserted into the womb)and amniotic fluid is withdrawn, and tested.
Believe it or not sitetest, but the simple and inescapable fact is: piercing the protective amnio sac is very dangerous to a developing infant in utero.
I really don't care why you and your wife decided to choose to undergo a dangerous and totally unnecessary medical test.
Yes, it is my considered opinion that you are both idiots.
Aside from that, what I vehemently object to, is the normalization of this “test” to the point of making it routine, standard, and eventually required.
BTW, did your wife abort your baby after obtaining the test results?
I wonder what the amnio would have read, for them.
I can't imagine our family without having had both of them in our lives.
It is hard for me to understand people who think it justifiable to even consider aborting a possibly less than perfect baby as somehow different than murdering an adult who is rendered less than perfectly healthy due to accident or disease.
As a side note, the same people who think elective abortion is acceptable, are vehemently opposed to the death penalty for adult criminals convicted of heinous crimes.
“Quite frankly, nothing you have posted on this topic leads me to believe anything you posit as ‘fact’ is true. I notice you site no actual specifics to back up your position...just random numbers pulled from the ethers.”
Well, I started out quoting the very same risk - 0.5% - as you did. Are you now unhappy with that number? If not, I don't consider that “very high risk.” I consider that “low risk.”
And I've spelled out on the thread a sufficient amount of information as to our actual reasons for going ahead with this test. I'm afraid that you just don't see having knowledge as being worthwhile. It appears that prudence and planning aren't concepts that mean much to you.
For my wife and I, they do.
As to what our own doctors were able to achieve - well, I'd go try to see if there were an Internet-available statistic for it, but, I don't really care what you think or believe. We know what our own doctors were doing in the mid-1990s.
As to the risk given as 0.06%, it wouldn't take much googling to learn about the study that shows that, and WHY the risk has been lowered due to improvements in technology. I'm not much interested in helping you out. I can find very easily any number of sources that show research to sustain quoted risks of well under 0.5%. As to the difference between what folks did in the 1970s, when risk was assessed as 0.5% compared to what folks do now, well, again, a quick google will reveal much.
Clearly, my posts aren't meant for you any longer, but at this point, for folks with open minds and hearts who are actually pro-life and who desire to influence people who find themselves pregnant with a child with Down Syndrome.
“Yes, it is my considered opinion that you are both idiots.”
Well, thank you! I consider you to be an enabler of abortion of disabled people, in that you are part of the attitude I find among other pro-lifers to oppose testing almost as a matter of a religious doctrine.
Some folks need to know the answers to the questions, if the answers can be reasonably found. If you tell them that they deserve scorn as idiots, well, I'm afraid that they may not have much time for you to hear out why they shouldn't abort their Down Syndrome baby. If you had an open heart and half a brain, you would realize that, even though in YOUR feeble mind you can't accept the risk, other folks are gonna test whether you think it's a good idea or not, and that if you understand that need, or at least tolerate it without calling folks idiots who deserve scorn, they might be open to the follow-on question, which is, why not consider keeping the child?
“BTW, did your wife abort your baby after obtaining the test results?”
Do you read, or does someone read off selected pieces and parts of posts to you, and thus, you were unable to read for yourself the small number of posts I've made on this thread?
And, of course, all of this wrangling about amniocentesis misses the point, which is that this blood test, rather than necessarily being something that can only encourage abortion, is something that could actually be utilized for a pro-life purpose, in that there isn't any fetal risk associated with the test, and we can shut up "pro-life" shrews like you and encourage, in a pro-life way the use of this test to help parents who may possibly have a child with Down Syndrome to prepare for their child.
Dear wagglebee,
This is precisely what I'm talking about - the assumption by pro-lifers that the only reasonable stance is against testing, that to test is to be pro-abort, that to test is merely the prelude to aborting. Well, yeah, sure, that's how the enemy would like to define the situation.
After all, most NORMAL folks will desire very much to know sooner rather than later, and much sooner than the anticipated delivery date, whether or not their unborn child has Down Syndrome. And thus, most NORMAL folks who get an initial indication that the child may, indeed, have Down Syndrome, will test.
And then, the pro-lifers having ceded the field of battle to the pro-aborts through their rigid scorn for the "idiots" who choose to test, will have forgone any chance to have any influence those who have tested - which is most everyone. So, the only folks any longer having influence over parents in this set of circumstances will be the folks pushing abortion. The only folks that will be heard are the folks who paint the darkest, most gruesome picture of what it is to have a child with Down Syndrome, who will emphasize the possibility of the worst case, both in terms of maturation and development, and in terms of associated physical health problems. Yeah, that's the way to do it.
Nice. Brilliant. Not.
But I don't know why we have to let the enemy do all the defining. I don't know why we can't show that the choice isn't between living in ignorance for months of one's pregnancy or committing to abort a Down Syndrome baby if one decides to test. That's a false choice that pro-lifers have permitted the pro-aborts to define as the only choice.
Every person is responsible for his own actions. But pro-lifers who react in this way to fetal testing for Down Syndrome help enable and promote abortion of children with the syndrome by not showing a way to reconcile the felt need for testing with the goal of protecting unborn children.
sitetest
The amniocentesis tests amniotic fluid in the womb, it is NOT a blood test.
I refused it in the mid 1990s, due to the openly published very high risk rate,(causes an abortion at the rate of one in every 200 patients) acknowledged as factual, by my Obstetrician, one who specialized solely in high risk pregnancies.
Converting the “risk rate” to a “percentile” distorts the dangerous nature of this test. The adverse reaction in one of every 200 infants tested, is death.
Not an acceptable lethality rate for an entirely elective and medically unnecessary test.
So you can either stop openly displaying your ignorance, or continue to spout lies and distortions for whatever reason you self justify.
“Really long post you authored to display a level of willfull ignorance that amounts to idiocy.
“The amniocentesis tests amniotic fluid in the womb, it is NOT a blood test.”
ROTLFMAO.
Really willful refusal to actually read the article of the original post, WHICH IS, IN PART, ABOUT A BLOOD TEST THAT ELIMINATES THE NEED FOR AMNIOCENTESIS to diagnose Down Syndrome.
READ THE ARTICLE:
“Laboratories are promising a prenatal diagnostic test for Down syndrome based solely on a blood sample from the expectant mother.”
THAT was the point of the transition in my post - we're arguing about whether a risk of something around .06% - .5% is a “high risk,” and the article is talking about a NEW TEST that has ZERO ADDED RISK.
Pay attention.
“causes an abortion at the rate of one in every 200 patients”
Ah, at least we have a starting point with which to agree, which is that it was formerly believed that the general rate of miscarriage from amniocentesis was around 0.5%. You consider that a very high risk. I consider it a low risk.
That's a difference in perception.
However, even by the 1990s, folks who did this often, were using ultrasound to help guide the needle, etc., were, in their practices, achieving lower rates of miscarriage. Sorry your doctor apparently was NOT one of the ones who had begun to use more advanced techniques or, for some other reason, was NOT able to lower his rate of miscarriage for this procedure. We were significantly more fortunate than you in that we went to folks who actually knew what they were doing and were able to reduce the incidence of miscarriage significantly in their practice.
Just like many others, as demonstrated in any number of studies for which citations are readily found on the Internet.
A 2006 study (look it up yourself) found a miscarriage rate of roughly 0.06% (which is, if you care, a rate of 1 child in 1600) as the methods used and technologies applied to amniocentesis (such as the use of ultrasound) improved the procedure. Other studies have found rates that vary, but almost all well under a rate of 0.5%
“The adverse reaction in one of every 200 infants tested, is death.”
Yes, but we were having only one baby, not 200.
“Not an acceptable lethality rate for an entirely elective and medically unnecessary test.”
In your view, the knowledge gained isn't particularly worthwhile. In our view, it was, for reasons previously stated.
And, that's the whole point. In the view of THE OVERWHELMING NUMBER OF PARENTS who are thought to be carrying a Down Syndrome baby, the knowledge is worth the risk, too.
Now, you have two choices: you can continue to stick your head in the stand, condemn those folks who decide to test, and cede the battlefield to the pro-aborts (thus enabling abortion of thousands of children), or you can encourage people to use the test results in a pro-life way - to prepare, to learn, to inform, to find support - rather than solely for the purpose of killing unborn children.
sitetest
Oh yeah, my wife reminded me about something which is actually mentioned in the article ABOUT THIS NEW BLOOD TEST THAT WILL DIAGNOSE DOWN SYNDROME WITHOUT AMNIOCENTESIS [LOL]:
“And many mothers of children with Down syndrome will say the same thing, expressing appreciation for having known their child’s condition prenatally so that they could prepare, on their terms, for how to share the news and for delivering at a hospital with the appropriate neonatal services.”
You write (falsely): “Not an acceptable lethality rate for an entirely elective and medically unnecessary test.”
For us, part of the purpose of determining whether or not our son had Down is that it would have changed the way we dealt with our pregnancy and delivery. We'd chosen to use a practice of nurse midwives to assist us through pregnancy and to have delivery in their house/office, when the time came. We had a backup hospital, in case anything happened, and, indeed, because of complications in delivery, we wound up piling my wife into the nurse midwife's old VW bug and driving up to the backup hospital, where delivery was ultimately assisted by both our nurse midwife and our OB/GYN.
We believed the use of the nurse midwife was the optimal MEDICAL way to go through pregnancy and delivery.
However, if our son would have had Down Syndrome, there were other options - MEDICAL OPTIONS - to be considered, including whether the nurse midwives would have agreed to continue to serve as our primary caregivers through pregnancy. Many nurse midwife practices avoid higher-risk pregnancies, as this practice did. As well, delivery in the office/house would have been out of the question - it'd all have happened in a hospital (and I don't think that the hospital in which our son was ultimately born was the ideal choice in our region for delivery of a Down baby).
Thus, the right medical path through pregnancy and delivery was different for a baby with Down Syndrome as compared to one without.
sitetest
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