WP: Down Syndrome Now Detectable In 1st Trimester

[kskiska]

Thursday, November 10, 2005; A01

A first-trimester screening test can reliably identify fetuses likely to be born with Down syndrome, providing expectant women with that information much earlier in a pregnancy than current testing allows, according to a major study being released today.

The eagerly awaited study of more than 38,000 U.S. women -- the largest ever conducted -- found that the screening method, which combines a blood test with an ultrasound exam, can pinpoint many fetuses with the common genetic disorder 11 weeks after conception. That allows women to decide sooner whether to undergo the riskier follow-up testing needed to confirm the diagnosis.

"This is a big deal for women. It's going to have a big impact on care for women, not just in the United States but throughout the world," said Fergal D. Malone of the Royal College of Surgeons in Dublin, who led the study published in today's issue of the New England Journal of Medicine.

Screening women before the second trimester allows those who might opt to terminate a pregnancy to make that decision when doctors say an abortion is safer and less traumatic. It also gives those who want to continue the pregnancy more time to prepare emotionally for their child's condition, and provides earlier reassurance to those whose babies are healthy, avoiding weeks of anxiety, Malone and others said.

more…
http://www.washingtonpost.com/wp-dyn/content/article/2005/11/09/AR2005110902079.html

[madeline_con]

1. Watch the RW try to shut it down....

saying it encourages abortion.

[Tight_rope]

71. Man...you took the words right outta my mouth!

[leesa]

83. Actually, this will ensure abortion doesn't go away IMO. There's no way

the non-religious RW are going to give up the ability to terminate a pregnancy if they know thw baby has Downs Syndrome in the first trimester.

[CONN]

101. Clarification: RWers don't have abortions...

They only have miscarriages.

[Initech]

91. Wow I was thinking the exact same thing reading this article...

[unblock]

2. we're getting this done tomorrow and friday

bloods tomorrow, ultrasound & consult friday.

it's not conclusive but does give a good idea if it's worth doing more invasive tests.

wish us luck!

[kwyjibo]

6. good luck & congratulations!

[Mel]

7. I wish you luck

I'm sending good thoughts your way.

[Hekate]

23. Blessings and luck!

:hug:

Hekate

[Maddy McCall]

38. Good luck, unblock.

I wish you and yours the best. I am sure that all will be fine. :hug:

[Ilsa]

67. Having had two amniocentesis (es), I wish you only the best of

luck and good news.

Yeah, I wouldn't opt for an abortion unless the results were conclusive, such as with a DNA analysis.

My next concern is that amniocentesis will be performed less often, making such a definitive test harder to get and riskier. (The more a doc does the procedure, the safer it is.)

[calimary]

73. MUCH, MUCH, MUCH, MUCH, MUCH LUCK!

I hope the results are favorable.

I had CVS for both my kids - Chorionic Villi Sampling. That was about 17 years ago. It was risky at the time, but for an older pregger such as I, it was highly recommended by my doctor, because I had blood-tested high enough to be worrisome. That, I was told, happened fairly frequently among pregnant women - that they'd test high for Down's Syndrome and spina bifida but then would wind up delivering perfectly normal, healthy babies.

Just do it. If nothing else, it'll give you direction and peace of mind one way or the other. It'll also give you a good clue what to do next, with plenty of time remaining if you need it.

Let us know, okay? Sounds like lots of us here are anxious to find out what happens. I'll keep my fingers crossed for you.

:hug:

[moc]

3. This screening test has a very high false positive rate

Out of 100 tests that are screen positive for Downs, approximately 94% of them will be normal fetuses.

[tuvor]

5. The article says pretty much the opposite.

What's your source?

[moc]

8. The original studies. Unfortunately, the manner in which the

researchers report false positive rates is incorrect from an epidemiologic standpoint. The false positive rate is calculated as the number of false positives divided by the total number of screen positives. The manner in which these researchers calculate FP rates is to divide the number of false positives by the total size of the population screened (i.e., screen positives + screen negatives).

I was able to calculate the correct FP rate based on data reported in the original studies.

I really don't understand why they report the data that way. My guess is that their emphasis is on what the undue burden would be on the health care system in conducting the screening, that is, how many unnecessary amnios are conducted. Because the initial positive rate (that is, the proportion of those screened who are identified as in the "worrisome" range of the screening test) is low, the overall impact of the false positives on amnio rates is not that great.

However, that is not the correct definition of a false positive and that is definitely not how it's viewed from the perspective of the pregnant woman. If a pregnant woman gets a "worrisome" screening result, she wants to know the likelihood that the baby she is carrying is not Downs. That probability, which is by definition the false positive rate, is 94%.

I have actually emailed the authors of one of these studies to inquire why they persist in using a non-standard definition of false positive rates, but I have never received a response.

(For what it's worth, I'm a professor in public health, specializing in maternal and child health.)

[unblock]

10. i'll keep this in mind if we get a "worrisome" result

of course, i gather the flip is also true -- that a non-worrisome results is also not particularly conclusive.

but it's nice to know that if we get a worrisome result there's still "only" a 6% chance of ds. so all it really means is that it becomes important to move on to cvs/amnio.

[moc]

11. Actually, the opposite is true...

The false negative rate is very very low. That is, if the screen looks A-OK, you can pretty much take it to the bank. :-) Just don't get overly freaked out if it's worrisome, okay?

Good luck! Is it you or your partner that's pregnant? Best wishes to you both!

[unblock]

31. it's mrs. unblock who's the pregnant one

i keep volunteering to take my turn, but medical science still hasn't figured out how to physically accomplish that one....

[GoddessOfGuinness]

14. A dear friend of mine had a false positive result from an amnio...

She's totally pro-choice, mind you; but she and her husband had decided to prepare themselves for a Downs baby rather than aborting.
He's a perfectly normal, healthy, 8 year old boy. You can imagine how fortunate they feel...

[FrankX]

64. I too had a friend who got a positive, kept baby and was fine.

[moc]

65. Wow!

:wow:

I've never heard of that before! I've heard of amnios being wrong on gender (if they accidently culture mom's cells instead of baby's), and I can also see them karyotyping mom's cells and saying baby is non-DS, but the other way around? Whoa.

Best wishes to your friend and her husband.

[KittyWampus]

56. Moc, I'd just like to thank you for taking the time to fill us in on how

this study is being presented and what it really means.

[moc]

63. My pleasure!

:-)

[superconnected]

102. moc, thank you for your information.

[hallc]

53. self delete

[hallc]

54. Where are you getting this from?

http://www.sciencedaily.com/releases/2005/11/051110082913.htm

This article has the numbers involved. I highly doubt they would call this a successful test for determining if your child has Downs if the false positive rate is that high. Not to mention they have been doing this in Europe for many years and have had great success with it.

[moc]

62. See post above for detailed explanation.

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=102&topic_id=1914678&mesg_id=1914763

Part of the confusion is due to the terminology used in the linked article. The "accuracy" they are referring to is the proportion of true positives who end up in the screen positive group. That proportion is indeed higher than the second trimester screening tests. Between 85-90% of Downs fetuses will end up in the screen positive group.

The false positive rate is different. This refers to the proportion of screen positives who are carrying non-DS babies. That proportion is about 94%. (The FP rate is inversely related to the prevalence of the condition being screened for in the population, so the FP will decrease with increasing maternal age since the prevalence of DS increases with increasing age.)

This is an important distinction for women undergoing the screening to understand. I've known far too many women who get completely freaked out by getting a "worrisome" screening. Better patient education would address this problem, but it is often lacking.

[hallc]

70. i see..

i know what a false positive rate is - can you maybe PM me your data you are using? Im curious.

[no_hypocrisy]

4. Still there remains the eternal ethical question:

You know you are carrying a child with Down's Syndrome during your first trimester. Now what? Would you carry that embryo to term knowing that you won't have a child who may not be recognized and accepted by society-at-large or would be agonize over whether or not to terminate, and if so, for what reason(s)?

I'm find this issue to be compelling and complex. I don't think a standard ethic can be imposed on all mothers. It is a personal decision for the present and for the future.

[nini]

17. I know a woman who aborted her baby because it was Down's

I had a hard time with that to be honest with you. I have worked with the disabled and to have that be the reason seemed selfish. But, I respected her decision and know it's easy to say what I would do when not looking at the decision.

It was tough :-(

[DemExpat]

32. Much discussion here in The Netherlands on growing pressures on parents

(from doctors, families and friends, society)
to abort even if they do not want to.

Very tough choices for some parents here.

DemEx

[nini]

49. I know it's a horrible thing to face

Like I said it's easier to be on this end and say what I'd do.

Very tough indeed.

[RaRa]

34. self delete

[LisaL]

39. So, how do you feel about women aborting healthy fetuses?

If you can't abort an abnormal fetus, when can you abort?

[nini]

48. before you get your panties in a bunch

I think you missed my thoughts. I was sad that the baby being DOWNS was the issue.. not for other reasons. I was just sad to see her go from thrilled about the pregnancy to find out it was Downs making her change her mind. I honestly think it was the stigma of having such a child more than anything. yes, she is a bit shallow. So, I know it was the right decision if she absolutely could not deal with it.

I have another friend with a Down's child and he is the sweetest kid ever and I know that is part of my reaction.


btw: I supported her along the way and did not lecture her.. that wouldn't happen as I am prochoice. But being prochoice does not make me not stop and be sad for this situation as it was tragic.

[LisaL]

97. No, I understood you perfectly well. You were upset with this

woman because she aborted her child solely due to this child having Downs. If you don't approve of someone aborting a severely disabled child, how do you feel about women aborting perfectly healthy fetuses? I mean, you claim to be pro-choice.
Obviously, there are people who would keep the fetus even if they knew the child will have Downs. But there also people who wouldn't. That's what having a choice means.

[C_eh_N_eh_D_eh]

105. Respecting someone's choice doesn't mean keeping quiet.

And telling them you disagree with their choice is not a violation of their rights.

If nini had actually tried to prevent this woman from having the abortion, then that would have been over the line. But simply saying "Here's why I think you shouldn't do this..." is anyone's right.

[LisaL]

109. Actually, I don't think it's your right to meddle into someone

else's very personal medical decision, unless this person actually asks you for advice. Especially if you are not even related to that person-what right do you have to give them medical advice they haven't asked for?
And lets say someone knows they are going to have a child with Downs. You are going to advice them to keep the child-they are the ones that will have to take care of the child, not you. So, you basically tell them they will have to struggle, go trough a lot of medical expenses-because-what exactly is you reason for why they should have a disabled child? You are not the one who will end up paying the bills.

[nini]

111. I never told her should or should not abort this child

I didn't ride her on the decision at all.

I meant that it irritated me it was more the stigma of the child being Downs than the burden.

I'm really sorry I even mentioned it as the point was not taken as intended.

But most importantly, you do not know me well enough to question my prochoice convictions. The fact I may question someone's decision in no way means I would deny them the choice of doing so, or as you say - interfere with it.

[pecwae]

42. I would have to say I support her decision

and respect it. She knew best what her capabilities and limits were. I, too, have worked with Down's children and adults, but have never been the parent of one. Some of us aren't up to the challenge that a disabled child presents; some aren't even up to the challenge of a perfectly healthy child.

[nini]

50. I agree with you..... it was just a tough thing to see her go through

and hated to see that be the issue. But like you said some are not up to the challenge and she obviously was not.

[slackmaster]

58. I knew one who smothered her Down's child then committed suicide

Very sad situation. The child was not her biggest issue, but she decided to take him out of the world with her.

[nini]

59. How tragic.....

:cry:

[Ilsa]

68. Working with the disabled and having one for your own child

are completely different. My son is autistic and this path is no picnic. It may not be selfish if there are other people in the family to consider. I know someone who had to make that decision, and it was as much about her four year old daughter as it was her 20 week fetus.

[HockeyMom]

72. I work with them too

and you should know that they are not all "equal". Some can be taught to fully function, with a little help, on their own and others never will. Some have families who are actively involved in their care (usually higher functioning individuals) and others whose parents placed them in homes as infants (several from Willowbrook). It all depends on the specific individual and the care received.

I had a cousin who was Downs. His parents were in their 40s when he was born back in the early 1950s. Contrary to the times, they raised him at home and had private tutors and later on, special services educate him and train him for a job and to be able to maintain some modicum of independence. He still could not maintain his own apartment and lived with his parents. When they got up into their late 60s and 70s, it became nearly impossible for them to take care for him alone. My aunt died when when my cousin was 35. My cousin died at 42 only within months of his Dad's death. Fortunately, the family had the money to hire a private round the clock care taker for both of them before their deaths. The only alternative to that would have been a home - for both of them. No, it is not easy. People need to think about the circumstances for later on in life. I do know from the people that I work with, there comes a time when the parents, as much as they would like to, are simply too old and sick themselves to be able to care for them.

[nini]

89. I know they're not all equal..

I said it was tragic and I KNOW it was easier for me to say what I'd do being I wasn't the one facing the decision.

My Step Mom's brother has Down's. Now that his mom and my step mom are gone he is on his own. Luckily, he is able to be on his own to a point and thankfully can do so. I know there are others who are not able to even come close to be self sufficient and the burden on the family is huge. It gets worse when the govt has cut so many benefits for those who cannot care for themselves.

Everyone's reaction to my comment was as if I would deny anyone making that choice. It is not - I would never do that. In the particular situation I described I believe the issues were not so much the burden it may be but more of a stigma type reaction. I didn't make that perfectly clear.

[expatriot]

28. When does it become eugenics?

The official def for eugenics is "the study of hereditary improvement of the human race by controlled selective breeding" so you could say that as long as it is personal decision of the parent's out of concern for the prospective child's welfare and not a policy decision imposed on the state, it is not eugenics. But then the question becomes, after some years of this test being readily available, will society begin to look at individuals with Down's and other geneticly detectable disorders differently? Will we ostracize parents who choose to carry their affected fetuses to term? Will there then begin to be policies?

[AngryAmish]

37. If the state has an interest in banning smoking or making folks wear

motorcycle helmets because of costs to society for health care cost, then the state has an interest in aborting Down's Syndrome fetuses because of costs throughout their lives. Special education, adult care, etc.

[iverglas]

41. the fact that the state has an interest

does not mean that the state is entitled to take action to protect that interest.

The state's ability to demonstrate an interest is merely the starting point. An example of the process that applies is found in Roe v. Wade itself.

The Court found that the state had an interest in "potential life" (or the several weird and wonderful ways it phrased whatever concept it was attempting to express) -- although it never did say what that interest was, or how it had been established. It then considered the interests of the pregnant woman. And it determined that those interests interacted on a continuum, from early pregnancy when the state's interest was completely overridden by the woman's interests to late pregnancy when the state's interest would prevail in most cases.

(Note that in Canada the state has never demonstrated an interest regarded as prevailing over pregnant women's interests in any circumstances or at any point in pregnancy, and no abortion-related legislation exists -- other than, in furtherance of its interest in public health and safety, the requirement that abortions be performed in appropriate facilities by medical professionals.)

It is virtually impossible to imagine a situation in which a court in a liberal democracy would determine that the state's interest -- in saving its money -- would outweigh a pregnant woman's interest in her life, liberty and security and thus enable the state to compel her to terminate her pregnancy.

To even put compulsory wearing of motorcycle helmets and compulsory termination of pregnancies in the same sentence is so profoundly demeaning to women that I'm virtually speechless.

[Ilsa]

69. That is why all decisions about whether to carry a pregnancy

to term need to come from the parents, especially the mother. I havew always maintained that if the state can dictate if or when you cannot have an abortion, they can also dictate when you must have an abortion.

[deerhead]

9. This Is Huge

I have a sibling with Down Syndrome. Advances like this hold out hope to me that eventually some treatment can be administered to a fetus that results in a healthy baby.

These are always complicated issues and there are no easy answers.

My brother is severely disabled. He can feed himself. He can't communicate or provide any level of self-care. Still, he means the world to us and our family loves him dearly. But I sometimes see flashes of the person he is lurking under the disability and it breaks my heart at what might have been. He's in a safe and happy environment and his life is the best it can be under the circumstances.

Would I have wanted my life without him? Nope.

Would I give anything to have him whole and have the chance at a full life? You bet.

This is one more step along the way for a baby yet unborn.

[Garbo 2004]

13. A good point. Can genetic treatments be employed to help future babies

like him? I don't know. That is the hope of course. But the choices for caring parents right now are hard ones to make. And caring parents do not make those choices, whatever they are, lightly.

[LisaL]

15. I doubt any treatment will be possible any time soon.

[expatriot]

29. I have known several families with Down Syndrome children.

On one hand you see how emotionally and physically exhausting it is on the entire family but on the other hand, the disabled member of the family is the focal point of so much love and "bonding" that they are truly some of the "strongest" families I have ever seen.

It sounds like your brother and you are both very lucky to have each other.

[hallc]

55. not likely

Since its chromosomal its in every one of their cells - there really is no way to get rid of an extra chromosome once mutation is already there. Maybe if they could find it at the 4 to 8 cell stage, but thats so early in pregnancy its quite improbable.

[interupt]

12. My niece born three weeks ago has Downs

I personally think the test is a good thing. The results completely came out of the blue. It was my Sis in Law's first baby, and she had been trying to get her hubby to have children for years.

The joy turns to concern, then numbness as Drs and nurses descend upon the baby and the mother.

The Karyotype blood test, which takes a 7- 10 days to complete, adds to the edginess. Surrounded by nurses who fully know well whats going on are desperately trying to be positive and reassuring (I used to be a nurse myself, and the few times I visited I sensed directly from them what was going on, and it was "bad news.")

Then the results come and the emotions go either way. Tears, remorse, anger, guilt (completely illogical but its always felt) and a strange numbness. (Five stages of grieving anyone?)

Of course the fundies will go on the offensive. They say it will encourage abortion. They will say it goes against the Will of God. But I have yet to hear anyone that I know abort their FIRST child because of Downs. I personally believe even if my family have another child and it tests positive for Downs, it would have to be a serious serious consideration before terminating any pregnancy.

It does give parents time to prepare emotionally, and there is a lot to deal with, and a lot to think of.

The good news with our family is that it went the opposite way. The birth and the conclusion was a celebration of life. My niece is a serious cutie and a meeting of minds and faiths (Catholic, Agnostic and Pagan)are certain that this girl has a bright future.

;)

[flygal]

16. Oh what a great post

She's in good hands with you guys. These are tears of joy ---- :cry:

[Hekate]

24. Blessings to you all and to a lucky wee girl with a loving family

:grouphug:

Hekate

[interupt]

36. Thank you

It has been emotional, but for the right reasons.

[electricray]

18. Just a note from a different perspective

First off let me say that I respect all the viewpoints presented thus far and I hope that no one feels that I am trying to take away from the views of those whose lives have been affected by Downs Syndrome. I merely want to present the idea of medical pregnancy and birth in a different light.

I believe that society today treats pregnancy and birth as an illness. There are tests upon tests and there is so much clinical advice available from so many sources that it seems to me that expectant parents can't help but be left with a feeling that the sky is falling when they go through the most natural and basic of all human capabilities.

My first child was born in a hospital with a very clinical CNM. We went through every test imaginable. We were incredibly worried with Cormac because my wife had begun bleeding early in the pregnancy and there was an event that we were certain was a miscarraige. It turned out that when my wife went in for the confirmation of the miscarraige there was still a heartbeat so we aren't sure what happened, but I digress.

We did not know what to expect with our first child and we were living in a new city with no friends and no one with a perspective different than the one that society puts to the forefront in every medium. We signed all the papers, took all the shots, and did everything that we thought was reasonable and customary. We were nervous wrecks. Perhaps it was due to our personalities, but a big part of me can't help but think it was due to the handling of my wife and child as if they were ill patients requiring medical assistance.

My suspicions are even more engrained in me with the natural birth of my second son, Cian. Our midwife was so wonderful and she explained every test to us as well as the history and statistics involved with bringing those tests into the realm of reasonable and customary. Then she gave us the option to get the test or not. We felt so incredibly comfortable that we gave ourselves over to the natural process of birth and, long story short, I witnessed my wife at her strongest moment and got to catch a 9lb 9oz baby boy in the bathtub of a beautiful birthing suite.

I don't tell my story to preach intervention-free birth (although I would love to share our experience with anyone needing more info) but I mention it only to introduce the idea. Every birth is unique. Every experience is up to the participants. There are positive aspects to testing and medical birthing, but if every OBGYN dropped off the face of the earth tomorrow, women would still give birth. The tests may give comfort to some and if you need them to stay sane during a very trying time, by all means get them. But please do as much research as you can. Talk to the most medical person you can find. Then go and find someone who reccomends giving birth in the most outrageous method you can imagine. Then ask yourself where you fall in the spectrum.

Good luck to all and I hope you don't mind my long-windedness.

P.S. I don't think that anyone has the right to pass judgement on a birth decision, so if it seems as if I am doing that, please forgive me and know that I don't mean to sound that way.

[Sgent]

20. I agree

if every OB dropped of the face of the earth, mothers would still give birth.

Of course, a lot of mothers would die in the process, and a lot fewer babies would be born for each pregnancy, with much higher rates of serious disease and handicap. But mother's would still give birth.

[electricray]

21. please don't spread misinformation

Respectfully, Sgent, you should do a little more research about modern natural birth before making such a statement. There are actually statistics available that show modern home births and birth center births have lower mortality rates than modern hospitals. And if you look historically at birth as a whole, there were higher mortality rates among mothers and babies across the board in the past, including in hospitals. It's false logic to assume that simply because more women are giving bith in hospitals that that's the reason there are better outcomes. It's the same kind of logic as: fewer pirates create greater global warming (ala Venganza.org) I didn't write this post to attack OBs. There are some very loving, caring OBs out there, and if a hospital, medical-oriented birth is what's right for you, then so be it. I'm simply saying that it's just not necessary to test, test, test, test, test all throughout pregnancy. Just like it's not necessary to test, test, test kids all throughout school. It just adds extra anxiety and doesn't really control anything.
Peace.

[iverglas]

35. just a note on that false logic

There are actually statistics available that show modern home births and birth center births have lower mortality rates than modern hospitals.

Do you suppose there's some connection other than the one you seem to be positing?

Like, maybe, women with higher-risk pregnancies tend to decide / be encouraged to deliver in hospital rather than at home?

My sister (see post below) would be an obvious case in point. She would have been a mortality statistic if she had continued trying to deliver at home. When she was removed to hospital, her and her fetus's chances of survival rose from about nil to very good.

Not all high-risk pregnancies and difficult deliveries turn out so well. And one might expect most of them to turn up in the hospital-birth, rather than home-birth, stats.

As for testing throughout pregnancy ... well, it didn't work in my sister's case, but I imagine that other women have been spared the distress she experienced when the ultrasounds did disclose things like phenomenally large fetal heads (I don't mean encephalytic, just big), badly positioned fetuses, etc. Then there are the things like hypertension and diabetes of pregnancy that it is kinda wise to test for, if you want to be able to avert a risk of dying or of you or the fetus suffering harm.

As for testing for fetal defects, that's entirely a personal choice. You may think that women are pressured into unnecessary testing, and certainly, some women may be subjected to that pressure. Some women may not care what the findings would be, or would not make decisions based on them, no matter what. Some women may need to be told more about the risks of some tests, or the meaningfulness of the results.

But really, it's pure equivocation to equate "testing" during pregnancy with "testing" of elementary school children, and say that because the one is, by agreement, not necessary, neither is the other. Testing during pregnancy *is* necessary, in some circumstances and by some people's definitions of what is necessary for them.

[electricray]

77. Don't misunderstand....

Modern midwives test for hypertension & diabetes. But there's a point to which the testing gets to be a bit ridiculous. OBs do much more testing than most midwives do (these days) and in my experience (we had both a hospital birth & a out-of-hospital birth) the testing & procedures that are done in a hospital, for the most part are unnecessary, and doctors are just doing it to cover their butts in terms of liability. If someone's going to sue a doctor, it's going to be because he didn't do enough, not because he tested too much. Something to consider... that eye gunk they put in newborns' eyes (an antibiotic) is only necessary if the mother has Chlamydia. But most hospitals don't tell you this. It's routine for everyone.

[moc]

51. This is not entirely accurate

As a preface, please know that I am very familiar with the epidemiological studies comparing outcomes for home births vs. hospital births.

There is one serious methodological limitation of these studies, specifically a problem with regards to power. First of all, comparisons must be limited by matching low risk women who are delivering at full term. Obviously, a woman who goes into labor at 32 weeks is not a candidate for home birth.

In order to detect whether or not there are differences in outcomes between home births and hospital births, you've got to first determine what the prevalence of bad outcomes is in these two very low risk samples of women. I believe the infant mortality rate in this group is something on the order of 1 per 100,000 live births. (Compare that to the overall infant mortality rate of 7 per 1000). I did a power calculation for one of the large studies reported recently on home birth outcomes, and the required sample size to detect a doubling of risk was something like 300,000 women per group. The study being reported (that showed no difference) had something like 20,000 per group. So, it sounds like a big study, but in fact it's not. The fact that they found no difference in outcome between these two groups (home birth vs. hospital birth) doesn't mean there isn't a difference necessarily, just that the study was not sufficiently powered to detect a difference.

So, bottom line is I'm not convinced by the existing data on the safety of home births. With that said, I do believe births are "overmedicalized" which leads to higher c/s rates, etc. However, I don't ever want to go so far as to undermine the real contribution that hospital births have made to reducing infant mortality. In the early 20th century, the infant mortality rate was 100 per 1000. Now it's 7 per 1000. Much of the reduction in the early part of the century was the result of moving births to hospitals. This also significantly reduced maternal mortality.

[electricray]

78. Not conviced of the safety of home births?

In a normal birth situation, it would be "safe" to give birth just about anywhere....except someplace ridiculous, like in the back of a pickup while going down the highway at 60MPH. If a woman is in a low-risk category, and is in good health, and normal, REASONABLE amounts of tests show that everything is going as planned, there is absolutely no reason that a home birth wouldn't be safe. Birth, in and of itself is not "dangerous." It's the exceptions that cause the problems. Modern, well-trained midwives are able to predict these exceptions very well. Our midwife was able to use her bare hands to determine the size & position of our child precisely accurately, as she has done with hundreds of other babies. She also does lab/blood work and will refer us to a specialist, when necessary. The difference is, she only did it when "necessary."

[iverglas]

26. not quite all women would still give birth

(do let's remember that it's women, not necessarily mothers, giving birth)

My sister would be dead, never having given birth. The 10+ pound pumpkin-head inside her would never have come out without some of that medical "intervention".

Oh, she started out with all the "natural birth" notions. She had an obstetrician -- and also a team of midwives, conveniently located just around the corner in downtown Toronto. Midwifery is a recognized health care profession in Ontario; midwives are nurse practitioners with further training in their field, and operate under the somewhat nominal supervision of physicians, and their services, like all "medically necessary services", are covered by the public health plan.

My sister had a gloriously normal pregnancy. Unfortunately, the ultrasounds and so on did not disclose the actual dimensions of the pumpkin-head's head. She went into labour at home, called the midwife ... and waited for things to move along. They didn't. She was eventually taken rather hurriedly to hospital, when her labour had exceeded the midwife's time guidelines for home births.

There, she was unfortunately second fiddle to a woman already in the obstetrical ward ... who was busily trying to bleed to death from a routine episiotemy (an injury which could, of course, have been even worse had it instead been a tear during "natural birth"). The staff was so busy pumping blood into her that they drafted my sister's midwife into calling other hospitals for blood.

Ultimately, my sister was given choices. First, morphine or demerol for the pain that had exceeded bearability: morphine -- more distressing for her, less distressing for the fetus. Then, forceps or Caesarian: Caesarian, more distressing for her, less distressing for the fetus. Then, at the last possible moment, the doctors decided to try a new-fangled vacuum device they had -- and it worked. The pumpkin-head was a bit of a conehead for a while, but she and my sister were alive and essentially unscathed, with none of the serious permanent damage and disability that could have been expected in one or both even if the fetus had somehow been extracted alive, and survived, in less high-tech circumstances.

But realistically: no hospitals, no obstetricians, and my sister would be dead, with a dead fetus inside her.

"Natural birth" is serious business. It is, in actual fact, quite "natural" for women in times and places when there is no alternative to natural birth to suffer serious and sometimes fatal illness during pregnancy, and disability or death during delivery. Like my friend's niece in west Africa, who bled to death after her delivery not long after my sister's bit of excitement.

Pregnancy and birth should probably not be as mystified as they now apparently sometimes are, but professional rather than amateur care is just as crucial in this case as it is in any other situation where a person's life and health are at risk.

[pecwae]

40. As I and my child would have been dead

My body lacks the ability to proceed with normal labor, so both my children were born alive and I remained alive because of OB intervention, Pitocin. Without this drug to stimulate labor both my child and I would have been dead 33 years ago.

[iverglas]

46. amazing to think about it, isn't it?

A couple of decades earlier, or the misfortune to be living in the wrong place then or even today, and you wouldn't be here.

My mother's mother's first child died in the mid 1920s, of strep throat. That was just before penicillin was available. My grandmother could do nothing for two weeks but wait for him to die.

I've been doing a lot of scrounging through online registration and census records in the UK in the last few months, pursuing family history. One of the first things that struck me was mortality patterns. Print out a list of ten people named, say, "Hill" who died in a particular year and place in the mid-1800s, and the ages at death will go about like this:

0
45
22
1
0
4
63
0
3
42

Tracing households through the 10-year censuses, children go missing each decade. The 1851 census just became available, and I found that my maternal great-grandfather, born in 1852, had two older sisters born in the late 1840s who were no longer there by 1861, and I was able to find their death records. We'd never known he had siblings at all (and in fact it gets very complicated, appearing to involve parental estrangement, different fathers, name changes ...), and there's only one I've identified whom I'm certain is a sister -- and then I found he also had a daughter we didn't know he had, from a first marriage we'd never heard about ... and then a few weeks later I found the death record for the daughter, in 1892. Dead at 20 of "morbus addisonis", which apparently usually referred to tuberculosis. No one in my family seems to have died in childbirth, except perhaps the first wife of another great-grandfather.

And then the next thing that strikes you will be the ages of household members described as "domestic servant", "coal miner", "cotton spinner" -- "piano tuner", in the case of another rather fortunate great-grandfather's case: 13, 14, 12. My great-grandmother was one of those domestic servant girls, and my grandmother's half-sister was the child "fathered" by the head of the household their mother worked in.

Gimme medical intervention, I think. And a few of those "liberal" notions like minimum wages, child labour laws, worker safety rules ... and reproductive choice.

[electricray]

80. I want to be sure to be respectful

of your situation, as I do not know you or your circumstance. It is highly unusual for a woman to truly *need* pitocin. That doesn't mean it's not the case for you, of course. But, it's very common in hospitals to resort to pitocin because of the enivronment & interventions that take place. These things can hinder birth. Birth is a very psychological experience. In the wild, an animal will simply not give birth when its being threatened...when there's danger present. Human women are the same.... just as a human woman may be unable to climax during intercourse because of her mental state.... or may be unable to "let down" and nurse her baby when she is stressed...the same is true of birth. My wife experienced this. Labor was going great...until we arrived at the hospital. 7cm, and then whammo....everything STOPPED....for hours...and the contractions were actually slowing down. Of course, she was given pitocin. There are many similar stories, though, when a woman who is in this situation is helped by mental imagery, guided relaxation, or a less stressful environment. The pitocin no longer is necessary. With our second child, my wife was past 2 weeks overdue. If we'd had a regular OB, she would have been induced with pitocin by then because "something was *wrong*" Fortunately our midwife let things progress normally, birth went great, and no stop during labor at all. I recognize that every woman is different, and I would never presume to say that no one ever needs intervention... my point is just that it's usually the first course of action in our "modern society" rather than a last resort.

[pecwae]

82. In my case

I was pregnant for 10 months both times. Each time the pitocin drip was stopped my labor stopped. Even when labor pains were 5 minutes apart; pitocin was stopped, labor stopped. Guess I'm just unusual.

[electricray]

108. Our horrible hosptial experience:

As for your pitocin experience, it sounds like that was right for you, and I'm greatful that you had those resources available to you. In our situation...

FIRST BIRTH:
-Wife had bleeding during 1st trimester
-OB said it sounded like a miscarriage
-Had sonogram, OB said wife was "most likely" going to miscarry
-Same day, in tears, wife underwent several blood tests (by incompetent technician who said "oops" after several failed jabs)
-Same day, wife also had Rhogam shot, "just in case"
-Same day, massive bleeding, including large "clots" and cramps
-OB said it was most likely a miscarriage
-We both grieved
-Two days later, went in for another sonogram for possible D & C of leftover tissue
-Fetus determined to be "still there & viable"
-Wife asked what the faux miscarriage was, and OB said she probably miscarried a twin
-Blood results came back with "dangerously low" levels of progesterone
-Wife was told to go to Pharmacy immediately and HURRY to the clinic because miscarriage was inevitable!
-Again in a panic (and tears) wife hurries to clinic to be given very painful progesterone in oil shots with the biggest, baddest needle I've ever seen
-I am trained to give my wife these painful shots at home, once per day, for weeks
-We are told that even with these painful shots, baby is still "in danger"
-Wife deals with intense pregnancy sickness & seriously sore butt & leg muscles for weeks. (To this day, she occasionally has pains in that muscle tissue
-All throughout pregnancy, we had more than a dozen ultrasounds to check to see if the baby was "still alive"
-And for every single test throughout pregnancy, we were told all the horrible things that could happen to the baby
-Can't remember how many times we emailed family to tell them the "bad news"
-At 30 weeks, baby was breech
-Sometime after that, wife was given another shot of Rhogam
-At 37 weeks, baby was forcefully manually turned, with thread of C-section if it didn't work - thankfully, it "worked"
-At 40 weeks, wife went into labor & was admitted into hospital.
-Nurses ignored wife's birth plan and pressured her to take drugs
-Wife was given IV for both pain drugs as well as antibiotics (because she had Strep B at one time, long before pregnancy and she was warned that if she didn't get antibiotics, baby could be born retareded or could DIE)
-At this point, labor had all but STOPPED and wife was panicking
-Monitoring was taking place and OB was not pleased with wife
-Nurse all but forced oxygen mask on wife - wife was gasping, trying to push it out of the way
-OB was glaring at wife, telling her she needed to do better
-Strangers held my wife's legs open while commanding her to push harder and longer...it was never "good enough"
-Wife was giving up hope, praying for death at this point
-Contractions had stopped
-Pitocin was given and DIDN't WORK
-Episiotomy was given
-Baby's cord was wrapped around baby's neck
-OB pulled too hard on baby's cord & it RIPPED LOOSE from his belly button
-Baby was bleeding to death
-Nurses rushed in, gave him oxygen...looked to be resusciating him
-Baby was taken away from us
-No reassurance that he would live
-Baby had an APGAR of 2
-Baby was given a massive does of IV antibiotics "just in case" of infection, including eye antibiotics that are routine for everyone (even though they don't tell you that it's only necessary if the mother had chlamydia)
-Wife was not able to breastfeed baby for many hours and when she finally got him, breastfeeding did not go well...and eventually breastfeeding failed
-Wife had urinary incontinence problems thanks to episiotomy
-Wife had serious postpartum depression

SECOND BIRTH
-Wife was worried about progesterone, because previous OB had said that she would need the shots again ASAP when pregnant or fetus would definately abort
-Midwife said "don't worry"
-Wife insisted on progesterone test
-Results came back EVEN LOWER than the first birth
-Wife was in a panic, but midwife insisted that she didn't need the shots
-Thankfully, wife listened to her and avoided them
-From that point on, nothing bad happened and pregnancy progressed just fine
-Wife worried about what would happen if there were again problems with the cord, and midwife calmly explained how she would be just as capable of dealing with the emergency, with specific examples
-We had ONE ultrasound instead of over a dozen, like most normal pregnancies
-Midwife convinced me to do a simple finger-prick blood test...Rhogam was not necessary (and never had been)
-At 30 weeks, baby was breech
-At 35 weeks, midwife said wife didn't necessarily need antibiotics even if she had Strep B
-Wife had Strep B test anyway...came back negative...antibiotics were completely unneeded (and may have been unneeded the first time, too)
-At 37 weeks, baby was still breech (by this time the last time around, our first born was forecable turned)
-At 38.5 weeks, baby turned on his own, all by himself
-At 42.5 weeks wife went into labor naturally (had she still been with the OB, it would have been induced by now...everyone was freaking out about how it wasn't "safe" that we waited "so long")
-Birth went smoothly. No coaching. No one holding her legs. No judgement. No pressure. Only occasional monitoring and only when wife wanted it. Labor was never interruped. Contractions were strong. Baby was born without intervention & without complication.
Baby's APGAR was a perfect 10. Breastfeeding started within minutes of birth. Baby was not given any unnecessary antibiotics. No postpartum depression. Breastfeeding continued with amazing success. Wife recovered from birth super fast.
-We were so grateful that someone gave us good information so that we could choose this path the second time

I hope this helps anyone out there who's making a similar decision
Thanks!

[electricray]

110. I forgot to mention...

That the "faux" miscarriage during pregnancy #1 turned out to be nothing at all, including the hype about miscarrying a twin. We learned the truth much later on. Just something that happens sometimes to some women, and there have been women who've passed clots as large as a baseball with no ill effects. So, all the worry and intervention in the beginning of the pregnancy was totally unwarrented & actually caused more harm than good.

[electricray]

79. I respect your story & your experience....

But (again, with respect), I have to note a couple things:

You said: "There, she was unfortunately second fiddle to a woman already in the obstetrical ward ... who was busily trying to bleed to death from a routine episiotemy (an injury which could, of course, have been even worse had it instead been a tear during "natural birth")."

I'm sorry, but this is entirely innacurate. The medical community has done a fabulous job of convincing us that tears are "worse" than episiotomies. This is just completely untrue. There have been books written on the damage caused by episiotomies, and in our area, there even exists a specialist who helps women damaged by episiotomies to recover. I don't want to get graphic, but some of the things that can happen in that "area" can be devistating. The muscles are all connected, and cuts can be brutal. My wife can attest to this, having given birth both with an episiotomy, and then with just a tear. The safest thing to do is tear, and it's the best way to heal, afterwards as well. There is a great deal of information available on this...I don't have it at my fingertips, at present.

Secondly, you said: "Pregnancy and birth should probably not be as mystified as they now apparently sometimes are, but professional rather than amateur care is just as crucial in this case as it is in any other situation where a person's life and health are at risk."

A good quality midwife, certified, licensed, having spent thousands of hours getting hands-on training, in addition to rigorous book study & serious testing is by no means "amateur."

[iverglas]

93. you seem to have misunderstood

I was perhaps not clear; when I said:

a routine episiotemy (an injury which could, of course, have been even worse had it instead been a tear during "natural birth")

I was referring to how it might have gone if she had not been in the hospital. She apparently had a completely unknown clotting problem (being an ex-lawyer and not a doctor, I don't know whether the problem was somehow pregnancy-related). If this bleeding had happened outside a hospital, as a result of a tear, she could quite well have bled to death before she reached help.

Your experience with your midwife was fine; so was my sister's. For whatever reason, the fact that my sister's fetus's head was not going to exit her pelvis without intervention (we are talking about labour that went on 6 hours past when delivery should have occurred) was not determined during any of her excellent pre-natal care.

A good quality midwife, certified, licensed, having spent thousands of hours getting hands-on training, in addition to rigorous book study & serious testing is by no means "amateur."

Again, you seem to have misunderstood. I did not suggest that midwives are amateurs. My sister was given pre-natal care by a group midwife practice in central Toronto, the midwives were qualified members of their profession --

http://www.aom.on.ca/About/What_is_a_Midwife.aspx

-- and she was regarded as having a low-risk pregnancy. She did. She unfortunately had a very high-risk delivery. Because she was in central Toronto, she was minutes from a hospital where the personnel and equipment needed to complete her delivery were available. Had she not been, forgive me for repeating myself, she would be dead. So, I would expect, the woman in the next room would be. As my friend's niece in west Africa is from post-partum haemorrhage -- and many women around the world are every year from various complications of childbirth.

A large majority of pregnancies and deliveries involve no complications and no life-threatening consequences. Some do. And it is simply not possible to predict with complete certainty which will be which, or why. All births involve risks, no matter where they take place, and all sites involve different risks: infections can be contracted in hospitals that are not present at home, situations can arise at home that cannot be dealt with but can be dealt with in hospital.

Balancing the risks to decide on the best approach is not by any means easy. But absolutely no one should assume that because she has a "low-risk" pregnancy she is immune to serious problems arising during or after delivery. The risk of totally unforeseen problems is always there for every woman. Personally, that risk is not one that I would accept, no matter how uncomfortable or stressed a hospital made me. Others may well choose to, but I would hope that their choice is informed, and that they aren't simply putting "feels good" in one column and "bossy doctors" in the other.

[electricray]

107. I think you & I are 98% in agreement

and the disagreement is basically about which is "safer"... a hospital or out-of-hospital. You obviously have put a lot of thought into your stance, and that is to be respected. It is every couple's choice where to birth, and I by no means think hospitals should be banned. When you say "feels good" in one column and "bossy doctors" in the other... I'd like to clarify, not to convince you that you're "wrong" (because your decision is yours & only you know what is right for you)...but rather for the benefit of this board & anyone who reads this posts...
To advocate avoiding risk by birthing in a hospital, "no matter how uncomfortable or stressed a hospital makes me" leaves out one of the biggest arguments for out-of-hospital birth... the fact that the stressful environment of the hospital is a big part of the "risk." A woman's emotional state has great power over her birth experience. Mind over labor. In fact, that's the title of a great book I recommend to anyone considering their birth options. I think I mentioned some similar situations in another post...about how a woman in a stressed situation may be unable to climax during intercourse, or a stressed woman may be unable to let down during breastfeeding...and of course we know that mental stress can do other things to the body, like create ulcers. I could make a long list like this. Modern science doesn't understand what causes labor to begin. It just happens... the body knows when to do it...but it usually happens during the night, and some people speculate this is because that's when a woman is most relaxed. The idea is that in a hospital environment, many women experience the "fight or flight" instinct and labor is unable to progress as normal. That's when the interventions start. Drugs, forcepts, monitoring, oxygen, more strangers in the room, perhaps shouting "coaching" the woman, etc. And the more interventions that take place, the stronger effect this has on the woman's psychological state, futher inhibiting the birth process...requiring even more interventions. When your pet cat is ready to give birth, she runs off to go hide in a closet or under a bed where she can have some privacy...she doesn't want people poking around and messing with her while she births...there's a reason for this! And the problem with hospitals is that they have certain protocols that must be followed. In my area, there is a hospital with many practicing CNMs and we also have many out-of-hosptial LPMs. When talking to both kinds of midwives, the CNMs are always upset about how often they are "forced" to do things they wouldn't do if they were attending a home birth or birth center birth. It's very frusterating to them. But, the hospital has requirements, and they are also directly managed by a physician...and the CNMs are performing tasks that they know to be damaging to the woman's labor process, but they have no choice in the matter. Out-of-hospital, the LPMs are freer to do what they know is best. Hospitals are businesses & they have think about the bottom line, and I guarantee you that litigation is a big part of every policy. Out-of-hospital midwives are underpaid, amazing goddesses who perform a service to women...without some big entity hanging over their shoulder. Hospitals have their place. But women who birth in hospitals are so much more likely to have interventions than women who birth normally, and a woman who would have had an otherwise normal birth should not have to be subjected to interventions that may cause her or her baby harm. Beyond death or injury, women who birth in hospitals are also more likely to suffer post-partum depression. All this being said (and again, with great respect for your own personal situation) there are still many people who will never feel comfortable birthing outside of a hospital (yourself included) and I absolutely respect that. If out-of-hospital birth is too scary, then it's not right for that particular woman. I just want to be a voice for options so that every woman can make the decision with everything in mind. We didn't know all of these things when we had our firstborn, and the damage that the hospital did to my wife & my son caused a great deal of postpartum depression for her. My son was within inches of his life BECAUSE of the hospital.

[loyalsister]

30. Thank you

that provides an opening for me.
I am one of the many emerging who are sick of the medicalizing of disability.
I am an almost radical pro-choice person who can, with some discomfort respect a persons choice on this issue. Yet, I still feel that I must ask the question:
What does this say about the existing members of our society who have downs?
I am greatly concerned about any possibility of further devaluation of people who have developmental disabilities by accidental implication.
If history is any indication, it doesn't take long for "compassionate prevention" to lead to the implementation of very bad ideas.

[DemExpat]

33. I do so agree here....

and here in The Netherlands we have an excellent health care system for pregnancy and childbirth that gives safe options for this process.
Midwives, home births, births in homelike birthing centers, hospitals....and most people here in this urban little couintry live close to a hospital in case of emergencies.

I had both of my children at home without testing, and am most grateful for having had the choice.

But there is increased pressure here on parents too to medicalize and test with increasing pressure to abort if tests have positive (for defects) outcomes.
Not all parents are willing to abort a disabled fetus/baby.

DemEx

[moc]

52. A trend in the U.S. that I find very disturbing are OBs who refuse

to deliver an older mom's baby unless she consents to an amnio. I have heard a number of stories like this and I find it appalling. I was 40yo when my son was born, and under no circumstances did I want an amnio. That is my decision (along with my husband's input of course). It sure as hell isn't the doctor's.

[AspenRose]

61. My OB/Gyn was flexible enough to let me have nuchal transparency

screening (I was 36).

She respected my right to choose not to have an amnio. Too bad others aren't following her lead.

[electricray]

81. Thank you, that was my point

There's just too great a culture of fear when it comes to pregnancy, birth & babies. How many decisions do parents make based on the statement that something "isn't safe" ?

Babyproofing
sleeping arrangement
feeding
playing
exploring
daycare
???????????

You parents on this board know what I'm talking about. The only reason we live in this climate of fear is because of doctors (not all doctors, but enough) who insist that the sky is falling CONSTANTLY and at every turn.... simply to avoid litigation in the future. Why is it that in my town you can find those spinning merry-go-round things and playgrounds? Remember those things that you could get going round and round, lightening fast? What happened to them? Those were FUN! Well, I can tell you why...they're just "not safe." So, today's kids have the privledge of growing up in a bubble-wrapped existence. Lucky them. =(

[iverglas]

94. well, I share your nostalgia

Back in the 50s, we had all those fun things. I fell off one. My femur broke clean through. I spent three months in hospital, in traction. It was an RC hospital, I was protestant, the nun who ran the ward was a tyrant from hell and her henchwoman nurse's aide was about as bad, for three months I was denied all contact with anyone from my life except my parents (an hour a day allowed) and my school board tutor, until then a stranger, and essentially I became a severely emotionally abused child. Only relatively recently have I recognized that this experience was the foundation of the complex post-traumatic stress disorder I now have.

Yeah, kids in hospital aren't treated that way now. But it still isn't exactly fun to suffer severe injury. I'm not too sad that we go to somewhat more effort to prevent it these days.

By the way, my little brother suffered a severe head injury not long after I got out of hospital. My mother refused to leave him in hospital because of my experience, and took 3 buses to the hospital and back every second day for several weeks to have the shunt in his head drained. Not a playground injury, that one. He was bouncing on a bed. You know how your parents always told you not to do that? They were right.

Now if someone could just invent roads without curbs and make them mandatory, I could stop breaking my foot ...

Life involves risks, and I'll be the first to agree with that (and point out that there is not always someone at blame when something goes wrong). Some risks really are not worth taking, or imposing on other people, though.

[electricray]

103. Some might say risk-avoidance is a risk in and of itself.

I could stay home around election time instead of walking my district. I live in a very conservative part of Oregon so progressive politics can actually be dangerous to your health. But I will not stay home. It is to great a risk to do so.

I think my whole point was that we are fed information about what we should be afraid of every single day and unfortunately in this bumper-sticker culture that fear is all we end up getting. We never get the whole truth and all sides are never equally represented. We end up rushing into war based on packs of lies. We end up missing wonderful family outings because of terror threats.

You will never catch me saying that I know best and that no one should ever trust mainstream information. I believe that all knowledge helps in making a final determination of your own path. Even in this thread people have gained the insight that you and everyone else have shared and they can now use that insight as food for thought. I just believe that all sources should be vetted. The only way we have to vet the info we recieve is through multiple source research. I just want to be one source.

I only hope that my information and my experience can help in someone's journey the same way that you hope that telling your sister's story will help someone make a responsible choice. I am truly sorry for all of the unfortunate incidents that you have told me about. No one should have to go through that much. But please don't think me ignorant for making or even recommending choices that aren't necessarily based on those experiences. I take every word you write to heart, as I do every word of communication from another human being in any format. But my eventual choice of what to support is my own and only I can explain why I came to it.

[AngryAmish]

19. Why don't handicapped folks have a right to live?

[Hekate]

22. That is not the issue and you know it

No one advocates infanticide -- and if you think early abortion is infanticide please don't talk to me I'm tired.

I am personally neutral on the subject of carrying a known Downs fetus to term, as it is an intensely personal decision and I cannot judge another's heart. Some Downs children can eventually grow to a somewhat independent life, while others are so profoundly disabled they will need others to care for their basic needs forever. Marriages can and do break apart when consumed by the needs of a very disabled (for any reason) child. Then what?

Genetic screening is truly a godsend for many couples. Tay-Sachs disease is unutterably cruel, as an apparently healthy infant sickens and then dies horribly in a few years. Huntington's disease is another, only it kills adults horribly over many years.

Once a child is born it is a person with inherent rights to be cared for. But tell that to your health insurance company. Tell that to Congress, which won't enact universal health care and which, under this administration, keeps slicing away at special needs assistance and education programs. Tell that to the credit card companies and mortgage bankers...

Actually your question has merit, but imo it should be mostly directed to Congress, which holds the purse strings of our taxes and passes the laws that should be helping and protecting us.

Hekate

[NIGHT TRIPPER]

25. it very well could result in aborting those ones that aren't "keepers"

but what's wrong with that, right?

[Hekate]

27. No duh.I said I am neutral & cannot judge another's heart, & I meant it

Abortion is a decision that is deeply personal and has a spiritual dimension. Yes/No. Women are moral agents. Some decisions are harder than others, by far. I'll support another woman's decision, whatever it is. Yes/No.

When I was a little girl my mother tried to explain miscarriage to me: "Sometimes Mother Nature makes a mistake." She knew it well. For whatever reason there are a surprising number of sperm/egg unions where something goes wrong in the early days and the zygote is either flushed out with the menses or is miscarried in the first trimester.

I guess that's Mother Nature deciding for Herself that some are not "keepers" -- and those who long to be parents don't know why and they grieve. Yes/No.

Sometimes the answer is No.

Hekate

[bleedingheart]

43. Try being the parent of a severely handicapped child...

I have a coworker whose younger brother was born with Downs. Her parents divorced because the father couldn't handle having a "retard" because it required far too much of his time and he wasn't keen on spending the remainder of his life tethered to the kid.

So my coworker's mother took care of the boy along with his two other siblings. Their lives revolved around the treatment and care of that boy. He was far more seriously affected by the syndrome and also had the characteristic heart defect that goes along with it. No one offered to babysit, or help or even offered a kind word...the family was basically isolated...

Sadly when he was 14 years old he died due to the heart problem (he had had countless surgeries to try and fix the problem..)

My coworker stated that due in part to living through that experience that she would not elect to have a child that was known to have a defect because she had "walked in those shoes"...and knew it was way more than she could bear.

I will also add from personal experience that I have normal children who have asthma and the first two years of my eldest child's life were hell due in part to his illness and it severely strained my marriage at times. We felt as if our life was only going to be the sickness part of "in sickness and health"...but luckily for us there were treatment plans and meds that made our life better and "normal"...from that small experience I can't but imagine the stress of having a child whose needs and problems were far more severe...not all people are up to the challenge and the life long committment that takes.

[iverglas]

47. and consider the good parents with the less severely disabled child

At 65, when most people are able to ratchet down a little on their responsibilities and worries, they're caring for a middle-aged child unable to care for him/herself ... and knowing that there will be nobody to care for their child when they die. The commitment is indeed life-long, and the worry dies with them but the child's problems don't.

A woman I know on-line was born with a cleft palate. She has said that if she discovered she were carrying a child with that anomaly, she would have an abortion.

To someone else, a stranger who had never walked in those shoes, she probably looks like a heartless, selfish cretin in search of a designer child. To people who bother to listen, she can explain that the years of misery she experienced because of that "minor" disability, physical and social and emotional misery, is something she would never knowingly subject a child to.

[davsand]

74. That woman with the cleft palate might be me.

I dunno if I'm who you were talking about, but I've told my story on here before. Thanks for understanding that I want to spare my child from living thru what I've experienced first hand.



Laura

[catabryna]

76. davsand ~~ Laura

would you mind if I pm'd you? My adopted son has a bilateral cleft lip/palate (he'll be 5 on Sunday), and I'd like to get some insight from you about your experiences in the hope that it might help me to help him work through the challenges he faces.

[davsand]

84. I sent you a pm.

I'll be happy to do all I can to help in any way.

Anybody else that has questions, feel free to PM me. I'll tell you what I can about the experience of living with cleft palate.


Laura

[iverglas]

92. not you!

Someone I knew at another board on line; one of the two on-line friends I share a birthday with. She's a pediatric neurologist, and one of the other women there was completing a graduate degree in particle physics. I figured that was close enough to say we had a brain surgeon and a rocket scientist. ;)

I had an intimate friend many years ago whose younger son had died before I met him; committed suicide with a family hunting gun at 13. He was born with the mildest form of spina bifida, a "club foot". He'd had several surgeries, and was apparently more depressed than his parents had any idea of. Again: a "minor" disability, a child who thought life not worth living.

I tend to be disturbed by tales of how a disabled child has brought sunshine to the lives of so many people, and set such a wonderful example of how life is so worth living even with all the pain s/he suffers. My most fundamental value is that people are not means to anyone else's ends; people are their own ends, the subjects of their own lives. Disabled children are not sent into our lives to make us happy or teach us lessons, they are born in order to live their own lives, just like all the rest of us. If we know that their lives are going to be hard and painful and choose to allow them to be born because we regard them as gifts and ourselves as lucky to receive them, or because we regard them as tests and ourselves as virtuous for accepting them, we are treating them like objects.

I would never speak negatively of anyone who made that choice, to have the child, because she has not necessarily acted from those self-centred motives any more than anyone else who has a child. But it disturbs me when anyone speaks negatively of someone who chooses to terminate a pregnancy in those circumstances, generally by calling that person "selfish". It is never "selfish" to terminate a pregnancy; that's meaningless. It can be very selfish to have a child, any child, if the reasons have all to do with one's self and not to do with the child.

I hadn't read your story before, and thanks for mentioning it again.

[Horse with no Name]

106. If it makes you feel any better

Cleft palate repair has become an "art" for pediatric oralmaxillofacial surgeons--at the larger hospitals.
If you ever had to make the decision, look into the newer techniques that they use these days.
I think you would be pleased at the advancements made in this area.
Good luck.

[LostinVA]

44. That's not what the poster said at all

And, like them, I would never judge someone who decided to do something like this. No one knows what someone else is feeling or thinking. It is intensely personal and none of our business -- like any medical decision. And that's what first-trimester abortion is: a personal medical decision that is NO ONE'S business.

Plus, saying this is "killing the handicapped" is agreeing with the RWers that first-trimester abortions are murder. It's a slippery slope.

[bleedingheart]

45. a neighbor boy I grew up playing with had Huntingdons...

while we were playing in the yard I had no idea that his mother was in the state hospital dying horribly of that disease. (he had been told she was already dead) It was my mom who told me about it when I was much older...

He had himself sterilized at 18, but I still pray that he will be lucky enough to have a longer and healthier life that than of his mother...

[KittyWampus]

57. Humanity Isn't Prepared To Deal With The Ethical Morass This Presents

It is indeed Eugenics and society WILL begin to discourage carrying any Down's diagnosed fetus to term and Down's babies who are born will be even MORE shunned.

How can I say this with such an air of certitude?

Where there's money to be made, technology and business profit does trump any ethical consideration and society changes to the advantage of Business and not its individual members. Example, we're used white phosphorus on civilians in Iraq in our war for oil.

I'm making no value judgement on those who avail themselves of this technology. Just making a comment about where this will almost certainly lead us unless we Evolve together very quickly.

[maximovich]

60. Now If Only This Medical Break-Through

was around the time Bush was born.

[Chemical Bill]

66. So will the repugs demand...

aborting these fetuses so nobody has to pay for any social services?

[VegasWolf]

75. This sounds like a holy battle between HMO's and the Holy Rollers! Both

Bush's base.

[Ayesha]

85. This makes me sick

Sure, it is better that the decision can be made in the first trimester, but the bigotry against people with disabilities seen here in this thread, and in society at large, is extremely disturbing. From here it is not a big step to aborting gay fetuses if a gay gene is found, female fetuses if a male is preferred, or cleft palate. Down Syndrome is not fatal in most cases, and thanks to improved educational opportunities, health care, and laws like the ADA, people born with it today have so much potential. Yet there is now a pressure, even an expectation, to abort fetuses that have it because it's just "too hard to deal with." Too hard because our society has become lazy and self-centered, and because of prejudice against people with disabilities. THAT is what we should be fighting, the hate that makes women want to abort, the internalized ableism that would make a woman with cleft palate hate herself so much that she'd abort an otherwise wanted fetus because like her, it won't look perfect.

Personally, I hope every woman who aborts a Down Syndrome fetus has their next "healthy" baby get injured during labor, fall out of a tree at age 5, or develop autism. That's the kind of karma they've got coming to them. Things can happen at any time - there will always be falls, car accidents, diseases that can't be detected. If you're not prepared to care for a child with a disability or special health need, you're not ready to be a parent. This quest for the "perfect" baby is eugenics at its worst, and strips our society of the very diversity that our liberal values embrace.

I'm pro-choice, but that doesn't mean I have to offer support and approval for every woman's choice. In fact, any woman who made this "choice" would get an earful from me, and possibly a few wheelchair tire marks on her toes!

[Bridget Burke]

86. How can you dictate what any woman should choose?

Why do you think that any woman would ask for your support or approval in any decision she might face?

If your definition of "karma" were correct, you would be in a wheelchair because your mother--or you--deserved it. I really doubt that is the case.

[davsand]

87. Self deleted.

I removed my post because I felt it was not going to improve the quality of discourse.



Laura

[ecstatic]

88. What about financial concerns?

After all, isn't that the cause of most abortions (normal and abnormal)? Isn't it extremely expensive to have a Downs' syndrome child? With Bush & Co. at the helm of this nation, we can't be assured that every chid's needs will be taken care of.

[Ayesha]

90. Financial concerns

are a reflection of our need for universal health care in this country, and full funding of education. This is yet another reason why we must fight for those things.

[Ilsa]

99. It certainly can be. Downs Children

sometimes have other congential health issues, like cardiac problems.

My autistic son takes as much in medication every month as most people spend on their house payment. And this isn't counting the more frequent trips to the ER and doctor for other health problems, accidents (which autistics are prone to), etc.

Universal healthcare is something we should have and is worth working for. But most people live in the here-and-now, and unless it is implemented today, they can't afford to wait and see.

[iverglas]

95. your self-righteousness

might have been prettier if ... well, if it weren't so very, very ugly.

[LisaL]

96. Wishing nasty things to happen to "healthy babies"-not cool.

Not everyone can handle raising a disabled child. Not should they be forced to, if they have means to prevent it from happening.
And like everybody else pointed out, thankfully, they wouldn't need your approval.

[Ayesha]

112. You're missing my point

I wasn't wishing disability on any child, I was just pointing out that a woman who aborts a fetus with a non-lethal condition is unprepared to be a parent at all. *Anyone* can have a disabled child, tests or no tests, because of genes or injuries or a myriad of other mishaps. Therefore, if you "can't handle" raising a child with special needs, don't have kids.

[Ilsa]

98. Please don't judge until you've walked in these shoes.

Personally, I hope every woman who aborts a Down Syndrome fetus has their next "healthy" baby get injured during labor, fall out of a tree at age 5, or develop autism. That's the kind of karma they've got coming to them.

That's pretty ugly. I have a child with autism. I suppose you'd like to speculate on whether I've had an abortion (or twenty)?

And I wouldn't recommend having a family of autistic kids. It's expensive and extremely difficult and usually tears up marriages. The only one benefitting is the pharmaceutical companies that make all the expensive drugs we take to deal with it.

[superconnected]

104. Very ugly post.

perhaps you want to take that back and apologize.

It may give your first argument a little more credibility.

[Duer 157099]

100. Wow, so many important issues raised in this thread

This is a very disturbing issue and there don't seem to be any easy answers.

I can see how eugenics comes into play, and I can see how people with Down's could, in the future, be even more discriminated against, and how this is all part of a very slippery slope.

And, equally, I see the other side as well.

Seems that majority of today's abortions are due to parental concerns, not about the child per se--in other words, typically the discrimination is not of the fetus (eg, gender, disability, etc). So there's not a "class" of (future) person that is frequently aborted. However, with this DS testing, that will become a reality. I wonder how it would feel to be a member (living) of that class, would you live thinking that most people feel you'd be better of dead? Would insurance companies stop paying claims for such diseases, arguing that it was an elected birth? What a slippery slope indeed. And it will be interesting to see where the health insurance lobby and anti-choicers weigh in on this.

This discussion made me think of a question: can miscarriage be said to be God's version of abortion? Could God actually be pro-abortion? Regardless of the reason, isn't that what it amounts to? I bet that argument doesn't go over very well in some circles...

This topic is too heavy.