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Y2K Bug Blamed For Miscalculated Down Syndrome Risk
Albanach writes: "The BBC are reporting in this story that the Northern General Hospital in Sheffield, England is blaming the Millennium Bug for getting wrong 150 tests for Down Syndrome with four mothers going on to give birth to affected children." The article actually idicates that four women were pregnant with Down Syndrome babies, and that two of them brought the pregnancies to term.
so because the age of the mother was calculated incorrectly, it fucked up the results? i find it hard to belive the doctors wouldn't notice a mistake such as that....
-teknopurge
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but should this be "y2k bug saves two lives"? It seems that (according to the article) the two mothers would have aborted their babies had they known they were going to have downs syndrom. I do consider myself pro-choice, but I don't think that aborting a baby just because it has downs syndrome is the right thing to do. I know many people with downs syndrome, including some family members, and there is no reason they can't live a happy life with parents that love them.
mp3's are only for those with bad memories
Well, what do you know. A bug that actually saved lives.
There are 010 kinds of people. Those who understand octal, those who don't, and 06 other kinds of morons.
I guess they had to blame SOMETHING, and since Y2K got no respect, they nailed that.
The implications are interesting, though. Wait until the anti-abortion crowd gets ahold of that.
"Sorry. We screwed up on the test. You should have aborted that one. Maybe next time."
Learning HOW to think is more important than learning WHAT to think.
"Whoops! Sorry, Mrs. Flittersnoop, we just discovered that your twins would have been OK, after all. It was all because of that Millenium Bug that we neglected to fix. Now, isn't that silly!"
Next week....
"Sorry to bother you, Mrs Flittersnoop, I know you're still upset over the loss of your babies. We've just received back the re-checked test results for your husband, and we're glad to say he didn't have terminal cancer, as our computers had indicated. Unfortunately, the mail didn't get sorted in time, and we've already given him euthanasia. Now, now. Don't cry! There are bound to be bugs in any computer system. Now, Mrs. Flittersnoop, be very careful with that uzi. We don't want any more accidents, now... Mrs. Flittersnoop.... Will you please stop looking at me that way.... This really isn't helping.... The EULA clearly states that we're not responsible for computer errors.... If you don't put that safety catch back on, right now, I'll have to make a written complaint...."
It's a small world and it smells funny; I'd buy another if it wasn't for the money; Take back what I paid (SoM)
I thought that it was common knowledge that the older you are the higher risk you are to having a child with Downs. Most of the effected patients were over 35 which is when this becomes a real risk. Aside from that, how accurate is this testing (when it is calculated correctly)? I don't know about you, but even if the test said I was okay, I would still expect that risk.
It's about how such an important piece of code passed dec. 31 1999 without beeing tested against Y2k, specially when everybody involved with the code knew it uses dates to give the result.
I wonder how many lines of code are still there, untested, waiting for someone to run them and screw things up big time...
What ? Me, worry ?
The screening test does not tell you whether or not the fetus actually has Downs -- for that, you need further tests, such as amniocentesis. It's this chance for further testing that was missed.
I would like to question the reason such testing is necessary in the first place. If a woman wants to become a mother doesn't the fact that she would consider termination of her pregency because her baby is "less than perfect" create some doubt about her ability to parent? We became parents because we loved children, not because we wanted perfect children.
My wife is a midwife (and previously worked with down's syndrome adults) and we are against most prenatal testing and find it offensive that a person who chooses to be a mother could reconsider because a doctor told her that her baby was damaged.
And no, we are not right to lifer's. We are liberal, UU's and pro-choice.
What is pirate software? Software for inventory of stolen treasure?
As do I. This is the exact interesting mix of ethics in technology (lumped in with gaming news and gadgetfetishism) that I come to Slashdot for. I condone this story wholeheartedly.
Oh, BTW (From Webster's Unabridged) -
Condone \Con*done"\, v. t. [imp. & p. p. Condoned; p. pr. & vb. n. Condoning.] [L. condonare, -donatum, to give up, remit, forgive; con- + donare to give. See Donate.]
1. To pardon; to forgive.
--
Evan
"$30 for the One True Ring. $10 each additional ring!" -- JRR "Bob" Tolkien
In a perfect world with mature people, we'd take the blame for the damage we cause and apologize for it. Even if it's a mistake, an honnest mistake is far easier to swallow than covering up and taking no responsibility or throwing the ball left and right. Taking the customer/client for a total retard, that is not only hard because of the mistake itself, but the added insult to the intelligence of the victim is really not needed especially in these cases.
If you're a doctor, you're supposed to be intelligent, if you fear something might be screwed up (Y2k was such an issue that you *CAN'T* claim you never heard of it), you take actions (paperwork instead of computer database for a short while, or even better, continue using the computer database while keeping a backup on paper and see if there's anything wrong comparing). I'm sorry but there's simply no excuses for this, oh you won't admit your mistake because you're scared you'll get sued? Well not only you'll get sued anyways, but you'll have a lot of media reporting your mistake AND your actions making you look not only incompetent (which you feared in the first place and tried to avoid), but also like an irresponsible immature child that will blame anyone but himself.
That said, I blame and will sue the heck out of the tooth fairy for not pulling out my teeth that got me a painful root canal treatment!
--- Metamoderating abusive downgraders since my 300th post.
my PC clock always goes to 2094 after y2k (mobo manuf. out of business, award bios doesn't care about end users). i actually had shipped to me a credit card which expired in '49' which leads me to believe they had some problem also.
:)
most operating systems (okay i've only tried windows, freebsd, qnx, beos, dos, and linux) report this date as '1994' (probably my BIOS reports it wrong). so this would make these mothers' ages VERY young indeed
-sam
The REAL sam_at_caveman_dot_org is user ID 13833.
This is just...sad.
I'm at a client's this afternoon for a meeting. When I'm done I'll go home to my wife and three daughters. Daughter #3 has Down syndrome.
There is no such thing as impartial journalism--the words a writer uses color the facts (and opinions) that he or she presents. In an article about a simple date validation problem the writer--and the hospital--manage to convey the idea that this simple computer bug is a catastrophe. After all--two children were born with Down syndrome.
Some readers might miss a point that isn't adequately made in the article: the computer program did not tell the mother whether or not the baby had Down syndrome--all it did was some simple calculation based on age (that's about the only significant factor) and project a statistical risk for Downs. A woman in the high-risk group would be informed that she might wish to have amniocentesis performed--there is no indication (or reason to believe) that the two mothers would have agreed to have the test, or if they had the test they would choose to dispose of their babies.
I submit that there's no moral catastrophe. But this article is an obvious symptom of a serious moral disease: use technology to select characteristics we like in children, and to dispose of children we don't want. Great heavens! A child who might have an extra chromosome, or a child who might have a predisposition to red hair. Egad--a child who might not have a Y chromosome (that would be a girl, if you slept through biology). Nope--terminate her, we'll try again.
The moral issue here isn't the software bug. (The bug, IMHO, is not that big a deal--any Ob/Gyn knows the risk factors. The program strikes me as a boondoggle.) The moral issue is the tone of the article--the obvious belief of the writer that families have been injured by having their children.
The article specifically mentions that these errors occurred as a result of whatever computer or program miscalculating the date when the year turned over to 2001, not 2000.
Perl - $Just @when->$you ${thought} s/yn/tax/ &couldn\'t %get $worse;
Putting AC's shrill pro-life rhetoric to one side, I am strongly pro-choice but I strongly object to the tone of your write-up suggesting a causal link between the negative Downs tests and the pregnancies being carried to term. There is no suggestion of this in the article. The point the article makes is that an accurate test would have given the Mothers the knowledge they needed to deal with the reality of their situation. Instead they received an assurance that proved to be false. There is no evidence either way on whther these mothers would have even considered terminating these pregnancies.
It Is the Nature of Information to Transgress Artificial Boundaries
This is a good example of how software is not tested. According to the article the problem was due to the mother's age not being correctly calculated. My question is, were there any sanity checks on the mother's age in the first place? Probably not.
It seems logical that for a critical application you would try to have as much sanity-checking code as possible. It should be plainly obvious that no one should have a negative age or be giving birth if they are over 100 years old. And sanity checking code is easy.
The common excuse, though, is the ol' "garbage in, garbage out". Which is fine -- but what if you don't know you have garbage? The software -- if it can -- should at least give a warning.
This gets down to one of the basic questions for software testing: What inputs can you rely on?
Software engineers know by now (at least mostly) that all user input has to be checked and validated. But what about system data, especially something as basic as the date?
The only way to protect against unexpected bad data is to do sanity checking at all steps in the process. If you know even a little bit about the domain, you can usually set reasonable bounds.
Software isn't really engineered unless it makes these kinds of checks.
Wrong book; try Brave New World by Aldous Huxley.
Liberty in your lifetime
The test that was faulty was *not* used as the basis for termination. It was used as a basis to determine the necessity of *another* test, amniocentesis, which is risky for both the mother and the fetus. (This information is clearly outlined in the article)
In other words, getting this test wrong put 150 women at greater risk for a test later in their pregnancy. Obviously the test was eventually done, that's how the four women who had fetuses with down syndrome were informed of it.
Another reason to get this test right is so that the amnicentesis can be done much earlier in the pregnancy, preferrably during the first trimester when an abortion is a viable option.
Whether you agree with abortion or not, it is the mother's choice, and I can respect the desire to limit suffering in the world, especially for your children.
GenericJoe
This story is providing a nice little showcase of how pro-lifers are so fixated on a single topic that they are incapable of grasping a reality with a broader context. Thanks, I've never been more confidently pro-choice.
Has anyone noted the article explicitely states that 2 pregnancies were terminated despite the false negatives?
It Is the Nature of Information to Transgress Artificial Boundaries
This test is given to women who want to know there risks BEFORE getting pregnant.
The womens decsion as to whether they should get pregnant was , partially, based on these tests.
This mens that the women where actually thinking about the ramifications of being pregnent, and kudos to them.
The Kruger Dunning explains most post on
*Sarcasm Mode Off*
Seriously, the number of erronious diagnoses is terrifying enough. The fact that people make life or death decisions, based on inaccurate data plugged into faulty & badly-maintained machines, is ghastly.
However, when you consider that the potential impact even one child can have on the world ("Lorenzo's Oil", "My Left Foot" both spring to mind, as does the drive to cure polio, smallpox, etc), directly, indirectly, or any combination thereof, it is crazy to automatically assume that hardships automatically rule someone out of revolutionising society.
"But those are so infrequent!", you might argue. I suspect that might be because the wall that all of us, myself included, put in front of people in such emotionally troubling circumstances is so tall that only a few can gather the strength to climb over.
But some do! Maybe, just maybe, we need to think about lowering that wall. See if more can cross this formidable barrier, and see if their courage in doing so, never mind any achievements they make, can inspire sourage in others.
I don't want to start a flamewar here, either, and I fully understand that there are going to be contexts in which all I've written above just doesn't apply, or where other considerations make any kind of alternative choice impossible. Some times we're faced ourselves with a wall that's just too tough to climb, or just not worth it to us. That's a personal, individual choice. Nobody else can make it.
My only concern is with "snap decisions" based on data which may (or may not) be wildly inaccurate, and which - even if accurate - may be misleading. Not all pain is bad, and not all suffering is evil.
We, who live in a world in which most suffering can be removed by a pill or with money, easily forget that. Too easily. Sure, pain isn't "nice", and nobody wants it, but it can lead to growth in a way that all the luxuries in the world can never do.
My single bone of contention in the entire issue is when people avoid -any- pain, simply because they blind themselves to the potential. Now, this is NOT the same as seeking pain. Those who seek pain should either receive treatment or go into politics. I'm specifically talking about the pain that accompanies learning, growth, wisdom and experience. Nothing else.
Facing that type of pain will result in gain. Any child, however "disabled" or genetically malformed, that somehow manages to accomplish that single feat, even if they barely survive the week, will have had a richer, more rewarding life than many.
If both parents -and- child achieve the impossible, work together to climb their respective walls, and survive the ordeal, at the very least, their lives will be richer than all the money in the world could ever dream of buying.
It's a small world and it smells funny; I'd buy another if it wasn't for the money; Take back what I paid (SoM)
I'm mystified as to where you are finding the message in this article that suggests in any way that the author's issue is with terminating pregnancies. The article explicitly states that the issue is the mothers not getting the best information for her range of options - termination not even being mentioned - of as you note, choosing to have amniocentesis at the safest time. There is a clear benefit to knowing in advance if your child is going to have a serious medical concern of any time - it allows proper prenatal care and both practical and emotional preparation. The point, as the article states, is that they should have known they were high risk but were misinformed they were low risk.
It Is the Nature of Information to Transgress Artificial Boundaries
Would you and you're wife had child #3 if you knew she would have down syndrom before you got pregnant?
As a parent I know how hard it can be to be impartial to that question when you see your beautifull child every day.
this is a serious question, and I am really curious.
The Kruger Dunning explains most post on
Would have done found the problem earlier. If they would have only done some of the calculations by hand every few test this would have been found alot earlier. I also blame the doctors they should be able to look at the results and sense something was wrong. I hope everything turns out ok for these women.
Comment removed based on user account deletion
Because I'm replying I'm unclear: I was originally talking about Slashdot's tone. But rereading Timothy's treatment, I realize it isn't really there. He just states the facts: Due to the Y2K bug 4 mothers were incorrectly told they were at low risk for Downs pregnancies who infact had Downs syndrome fetuses, 2 carried the pregnancies to term. If you read the article and the Slashdot review you realize that basically it is just the rabid, mostly pro-life sentiment trying to turn this into an abortion issue. There is absolutely no suggestion anywhere in the article or in Timothy's treatment suggesting this testing should or should not be used as a criteria for choosing whether to have an abortion.
It Is the Nature of Information to Transgress Artificial Boundaries
Not looking to either karma whore or be redundant, but since I've never seen a story so widely misunderstood here even by people who seem to be reading it, I'd like to lay it out as I understand it.
If I've gotten something wrong, please correct me.
The bug affected an initial screening process that used blood test results and the mother's age and weight to determine the risk of Down's Syndrome. It sounds to me (I'm unclear on this) like the error was caught and 150 women who had been told that they were in the low-risk group were actually high-risk. Four of them turn out (this is where I start to get confused -how?) to have had Down's Syndrome babies. Two of them (I guess) still had amniocentesis and aborted the babies and the other two had their babies.
OK, I'm realizing I'm confused about this too. Anyone have a clearer understanding?
Let me put it another way. The story is about mothers who want additional information about their babies prior to birth. Some of those mothers will use this information to prepare as much as possible for the fact that they're going to have a baby with special needs. Others will decide other options, possibly to abort the baby. Let's suppose that it's a different set of tests. It's a set of tests that you do after the baby is born to determine whether or not that child is going to be autistic. (To my knowledge no such test exists - this is hypothetical.) Wouldn't you be offended at the idea that some are running these tests for the purposes of trying to determine whether or not to kill their children?
The point is that you shouldn't jump down the pro-lifers throats because they think that a murder might be committed. That's what they think, trying to protect the person being murdered is a more than reasonable reaction. If you disagree with them, disuss why you think that it's not a murder. Discuss why you think it is a legitmate choice.
Can't we once and for all, address what the real issue is in abortion: Is a fetus a life? Every thing else depends on how you answer that question. So let's talk about that question.
Key to financial independence: Spend less than you earn. Save and invest the difference. Do it for a long time.
Although I had never met the boy, I went to the memorial service to support my friend. It was a very informal event. His family, friends, teachers and therapists were all present. One by one they took the podium to say a few words about how Michael had enriched their lives with his joy, enthusiasm, and love. Not a single person in the room -- and certainly not his parents -- regretted having known him, or begrudged him their efforts on his behalf. As far as these genuinely good people were concerned, the rewards for having done so far outweighed what it cost them, and Michael's presence in their lives was a gift from God. It was extraordinarily moving.
Having made the choice myself, together with my wife, to maintain life support for a very prematurely born infant when we were given the choice to terminate it, knowing full well that he would likely be severly disabled, I cannot regard the decision to abort a potentially disabled child as anything but evil. They really are gifts from God. Raising them makes you a better person. Throwing them away as if they were nothing more than organic trash is sick. The fact that society seems to assume that anyone would want to do so is a sign of a very sick society.
In other matters, I suspect the reliance on a computer program to diagnose risk factors is a consequence of the UK's wonderful national heath system. Yes, a living, breathing OB/GYN certainly would have known the risk factors for Down Syndrome and other diseases without the aid of a computer. But I suspect that MDs are dispensed with for routine pregnancy counselling and diagnoses in order to save money, being replaced with relatively untrained personnel running expert system. Disturbing as the implications of this story are, it's a good example of why this is a rather bad idea.
And the brethren went away edified.
Consider this:
The problem is not for the parents, the problem is for the children who were murdered. I'm pro-choice: I think that the children should be consulted and given their rightful choice before anything drastic is done to them.
Babies have survived ``miscarriage'' at less than 18 weeks and grown up to be healthy adults. Babies as young as 8 weeks from conception have demonstrated some awareness of invasive abortion procedures, and made what any sane observer would classify as attempts to live. A baby is a baby from the start, not a blob.
Before anyone trots out that fish-stage recapitulation crap, remember that it has been known to be a fraud for over 100 years but is still used as an excuse to murder children today. Why? Why lie?
My sweet and cheerful little Downes-syndrome niece, Joey - now 11 but with a mental age somewhere near 5 or 6 - would be dead if my sister wasn't pro-choice like me. Maybe you would be dead too, if someone had decided that the odds of you being Downes were too great.
It's not ``terminated,'' Coward, it's killed. Are you interchangeable? Can I kill you if I don't like you, and make a replacement, no worries? Are you sure?
Got time? Spend some of it coding or testing
Japanese culture of a century ago would have selected for small feet in their girls. This may have had interesting developmental consequences, given that the genes for characteristic features are very often multi-purpose and spread around the DNA. Hitler would have murdered Einstein in utero or sooner, given the chance. There are a lot of consequences to un-natural selection of which we are not yet aware. Even if we are fully aware of the consequences, can people be relied upon to base their kill/keep decisions on rational grounds?
I'm also pro-choice. IMHO, the child concerned should be consulted and given a choice before anything drastic is done to or with him/her. Can you pick any physiological marker during a child's in utero development at which the child stops being ``a blob'' and starts being ``human?''
Got time? Spend some of it coding or testing
"Eugenics", when applied to human beings, is rightly considered a dirty word by most civilized people I would hope. The Nazis showed us how slippery the slope is.
(I'm not talking about whether abortion as a whole is right, perhaps another thread should discuss that).
I enjoy a good righteous flamefest as much as the next guy, but be aware that's exactly what your asking for here.
And the brethren went away edified.
I have no problem seeing how far behind others I am in some areas. It's highly unlikely I would ever be able to marry. I have tremendous problems speaking when I'm confused or in a noisy room (sometimes I can't speak at all for even a few days). I'm barely able to work, but somehow manage to make it through a workplace designed for non-autistics. (computer programming is a blessing for people like me)
Should have I been aborted? I don't think so. Was I a lot of work for my parents? Yes - I was a very difficult child to raise (I didn't speak much of my childhood; I bit other kids and I banged my head against the wall at times). Was I a happy kid? Sometimes - it depended on if I was being abused by the other kids or not. Autism wasn't hell - the way I was sometimes treated was.
I am very happy now. I love life. The sensory "issues" that I have sometimes make life difficult, but being able to see the mountains the way I can - getting lost in the sensations - makes up for it. Enjoying rocking back and forth or simply humming to myself brings me a lot of joy - and I won't let anyone take this away from me, even if they think I'm "less human" then they are.
Please don't assume anyone with a disability is unhappy. We might actually enjoy life. Some of us don't, and I realize that, but many so-called normal people commit suicide - surely they weren't happy either. From someone who has lived with prejudice my whole life: Don't you dare judge the value of someone else based on what you think you see.
I will also say that it is very possible for a mentally retarded child or "severely" autistic one to be happy and enjoy thier life. Who are you to take that away from him, simply because it would take "work?" Who are you to judge who is valuable to society and who isn't? I wonder how many slashdotters who, although very intelligent, did very poorly in sports and PE. Are they all less human because of this? Are they more expendable? Wouldn't it be horrible to know you were bad at sports? How is this any different then being "slow" intellectually?
I will also mention that the Nazis, through euthenasia, killed first the mentally and physically handicapped. I fear I would have been one of the ones killed if I lived then. They did this before they started killing the Jews.
It not only sounds cruel, it is cruel. You're speaking with only a tiny smidgen of real-life experience, and not from any real knowledge. Educate yourself before spouting nonsense next time.
And the brethren went away edified.
You also seem to have missed that in many cases autism is treatable. It's not easy, but it can be done. We ought not kill people who have a treatable disease when we have a chance of giving them a life instead.
Is "natural evil" a Protestant term? I've never heard it. I'm a fairly well-educated Orthodox Christian, and we would consider this term heretical. No evil is natural, strictly speaking.
And the brethren went away edified.
I wish that were true. I don't mean to flame you--before Annie was born I had that innocent view of the medical world as well. I daresay you have never been offered amniocentesis, or had a child born with a serious disability.
Let's start with some simple biology. Down syndrome happens at conception. My little girl doesn't have a birth defect--she has a genetic defect. Amniocentesis, as far as I know, doesn't tell you of any condition that can be helped with prenatal care. Unless you define abortion as prenatal care. The purpose of amniocentesis is to identify genetic defects.
We've been called by the county several times to counsel parents who have had amniocentesis and heard the words "Down syndrome." The doctor's advice is always abort, abort, abort. The doctor is in full-blown damage control: the parents hear the worst possible case--how the child will have a damaged heart, damaged lungs, will require open-heart surgery within weeks, will live less than 5 years. They hear about mental retardation and the likelihood of spinal injury and the meager prospects for a "meaningful life." The "emotional preparation" they get from the doctor is a combination snow job and horror story.
What the doctor doesn't tell you is the million and one things that make Downs kids unique. That they have "loose ligaments" that make them the stretchiest and snuggliest kids in the world. (Daughter #3 crosses her legs Indian-style in front of her pillow, then bends forward onto her pillow and falls asleep--if you don't have Downs, you'll permanently injure yourself. This is how they take naps.) That there is something mysterious--something mystical--about Downs kids and animals. We have off-the-racetrack Thoroughbreds, and they're tough for experienced horse people to handle--but they'll stand for Annie, and docilely stand while she holds them on leads.
Is every obstetrician in America needlessly, hopelessly, cruel? No--but every obstetrician in America is in, by far, the most expensive medical specialty due to the crushing liability premiums they pay. If there is any possibility of any kind of problem they have a built-in incentive to encourage--to the point of a really hard-sell--abortion. That's why they push amniocentesis--and if you refuse amniocentesis, they will haul out legal forms and insist that both you and your husband sign waivers of any right to sue.
The reason I think the article conveys the view that children are now disposable commodities is that the author never even suggests that having a child with Down syndrome might not be a bad thing. Instead the fact that two kids with Downs were born is written as a failure, as a breakdown of the government system, and as a reason to call for a new "reference" program against which all other such programs will be compared.
I'm--obviously, right?--close to the subject. So perhaps I'm quick to hear the echoes of Peter Singer's "end the suffering" (by which he means, "off the imperfect") palaver. Down syndrome represents tragedy and suffering: suffering is bad; thus, end Down syndrome. (Singer says this with more or less those words.)
I'm not going to say that Down syndrome is completely without suffering. In fact, Daughter #3 is still up (it's 11:12 pm) telling knock-knock jokes, way past her bed time. So there's going to be a little suffering on her bottom if she's not in bed in about thirty seconds....
Er--ah, um. Actually, it was my wife who got pregnant. (Although she kept saying, "you did this to me!" all through labor....)
All jesting aside, I can't answer the question in the abstract. The question I can answer is "if you knew Daughter #3 would have Down syndrome, would you have aborted her?" The answer is a simple "no." When the doctor offered amniocentesis my wife refused. When the doctor more or less insisted, she refused. When the doctor suggested that she should return with me for "counseling" she asked if he thought she was incompetent--all amniocentesis does is give you the bad news. Since abortion was simply out of the question, she refused.
That said, Down syndrome is not, by any means, the worst possible disability. There are other trisomies (where there are three chromosomes in a "pair"); there is Tay-Sachs; there are other genetic defects; there is cerebral palsy. Handicapped kids frequently start in "early intervention" programs within weeks of birth--of the kids in Annie's first class fewer than half are alive nine years later. We know mothers and fathers with preschoolers that can't lift their heads off the floor--we know parents of "kids" who are in their twenties and still wearing diapers. None of them would "dispose" of their kids--none of them would give them away.
The closest I can come to answering your question is to tell you about my brother and sister-in-law. She comes from a family with a genetic condition that prevents the body from absorbing iodine--boys usually get it, girls usually carry it. If they have the disease they develop terrible rickets (bowing of the legs) and have to have a series of orthopedic operations through their growing years. When Dave and Suzanne married they had to face the question: do they have children or not? They have two daughters--and their second daughter (in a very rare circumstance) has the disease. Every summer they fly to St. Louis (he's in the Air Force, so every summer they're flying from somewhere new) for observation and study of her condition, and usually surgery to insert pins into her legs.
I think they made the right choice.
I'm 26, and I never bought into the "without ___, life is worthless" school of thought, except for intellect.
Friends of mine said they'd kill themselves if they became a parapalegic, or went blind, or whatever. I never agreed. I love to read, I could base my life around that, or if needed, talking books, or braile, etc.
What would kill me is being too dim to do everything that makes my life worthwhile now, too dim to even understand what I used to live my life for. But, smart enough to realize everything I used to love and how I was completely incapable of it.
That's the only thing (short of being a complete vegetable) that would make me want to end it.
Well, get the shotgun, time for some abortions, right?
/. already proves we have plenty of arrogant intelligent snots more interested in mouthing off than doing anything to help out. So when I see articles mourning their birth, I get a bit upset. Yes, it's sad they weren't born UNAFFLICTED. It is sad this cannot be reversed in the womb to prevent them from being crippled. It is NOT sad that they were BORN.
The bias in this mere report is disgusting. One can hear the shock and horror in timothy's voice: "and that two of them brought the pregnancies to term."
OH NO!
Look, I've known many retarded people in my life, including a family member and his friends. Most of them were sweet, kind, and gentle people who weren't half as dumb as people make them out to be. I think the world isn't harmed when a sweet, kind, and gentle person is born, since
-Kasreyn
Kasreyn: Cheerfully playing the part of Devil's Advocate to hairtrigger
"'This was a simple error that shouldn't have happened... I have every sympathy with the families involved.'"
Translation: Damn, didn't catch those ones in time. Got an axe?
"The later the test is carried out in a pregnancy, the greater the risk to the mother and her unborn child."
I find this one QUITE amusing. Seeing as how if the test is carried out late in pregnancy it will be after the legal limit and the mother can't have the child killed, I believe it is the exact opposite, and later testing vastly reduces the risk for the child. =P
"They were put in the unacceptable position of being given reassurance by the test and then having that taken away from them."
I see this as monstrous. "Oh, thank god my baby will be (note capital N) Normal! I wouldn't want him to be one of those RETARDS, those FREAKS.
Karmatic retribution?
BTW any woman who hasn't heard how risk of Down's increases with age must either:
* have lived in a cave for the past 10 years
* cared so little for her baby or herself that she was too stupid to do any research
So in this case I'm torn between being saddened by the two aborted children, or relieved they were not raised by such incapable mothers.
-Kasreyn
Kasreyn: Cheerfully playing the part of Devil's Advocate to hairtrigger
And guess what...a child who ISN'T genetically malformed will be more likely to accomplish MORE than a single feat, and survive more than a week.
Yet, the facts are indisputable. Those who overcome great hurdles in life are the ones who accomplish any feats at all.
You claim that the healthy can achieve more, but where are your achievers? Name ONE, just one, achiever who has accomplished, in ANY field of your choice, ANY measure of success, and has NEVER contended with adversity, in the process.
To achieve is to be focussed, beyond mere normal measure. If "normal" people could achieve such focus, there would be no homeless, no starving, no welfare cases, no addicts, no grunts, no plebs. These roles are filled by the "normal", because the lack of adversity is the greatest disability of all. It doesn't kill the body, but it murders the mind and massacres the spirit.
It's a small world and it smells funny; I'd buy another if it wasn't for the money; Take back what I paid (SoM)
These became understood because, eventually, people realised that there were just too many people in the "mentally disabled" category who were mentally as superior to the average "person in the street", as that average person was above a single-cell amoeba.
Asperger's Syndrome, a "mental disability", afflicts maybe 60%+ of all computer programmers. In the 1970's, these people would have been considered "retarded". These days, many earn 5 digit salaries, and a far higher percentage are millionaires than almost any other category.
What is defective one week is in MASSIVE demand the next, and is the life-blood of civilisation by the end of the month.
THAT, alone, is reason enough to question any assumptions about "retards". Have they some talent, as a consequence of their "disability", which could utterly crush the smug prejudice of the "able", =yet again=???
It is my belief that you should spend less time looking down on these people, and more time working with them. Maybe you can find the next Professor Hawking, who hasn't exactly been slowed by his genes, now, has he.
It's a small world and it smells funny; I'd buy another if it wasn't for the money; Take back what I paid (SoM)
Hi!
Yes--there are unfortunate children without quality homes. I don't know if my brother and his wife considered adoption--but my brother and I grew up with a neighbor who was adopted (as a young teen), and we had several adopted kids when we were camp counselors. I'm certain they were aware of adoption as an option.
But while my sister-in-law's family has an inherited genetic condition, it is not an insurmountable obstacle. Yes--you might say, "gee--I don't want this genetic trait to continue." But think about that in the context of a family--how do you say to your brother (or your father), "I don't want to have any children like you." Kind of a tricky issue.