A little knowledge

In January 2007 the American College of Obstetricians and Gynecologists (ACOG) issued new guidelines recommending first-trimester Down syndrome screening for all pregnant women, regardless of age. That means this year, 4 million American women will be offered first-trimester screening for DS, and thousands will receive a positive prenatal diagnosis. This protocol is supposed to increase women’s reproductive freedom, but I fear it does just the opposite.

Some background:

Down syndrome is the most common genetic disorder, affecting 350,000 Americans. It’s caused by abnormal cell division which results in three 21st chromosomes instead of two. This extra genetic material causes mental retardation and can cause a variety of health issues, including heart defects.

Until recently, screening for DS was available for any pregnant woman, but urged only for those aged 35 and older. It began with a blood test called the triple screen, which used blood chemistry to determine the likelihood of DS and other congenital abnormalities. Performed in the second trimester, the test was notoriously inaccurate, with a false positive rate of 5-8% and a false negative rate of 35-40% (meaning only 80% of DS occurrences were detected). The most the test could offer was an indication whether a woman should consider amniocentesis (aspiration of amniotic fluid to examine the fetus’s chromosomal makeup, which has a 100% accuracy rate).

The new screening procedure for DS is much more accurate, and less invasive. Here’s how it works: the triple screen blood test is given in the first trimester, along with an ultrasound exam called a nuchal translucency test. This exam measures the amount of fluid in a certain part of the embryo’s neck, which can partially indicate the probability of Down syndrome (amazing, huh?)

The combination of these tests can detect 95% of occurrences of Down syndrome, without amniocentesis. There is still a false positive rate of 5%, which means amnio is still indicated in some situations. But amnio itself is less risky now: the spontaneous abortion rate is 1 in 1600 pregnancies.

And now, back to my worries.

Clinical climate

A Harvard study by Dr. Brian Skotko has shown that many doctors provide inadequate, incorrect, or overly negative information, might intentionally or unintentionally pressure a woman to terminate, or may be simply incapable of providing hope to parents.

I heard about many such scenarios when I began collecting personal essays for my book about children with Down syndrome. Time and again, women wrote about obstetricians and perinatologists who had no clue about how to support a patient in this situation. Their responses ranged in severity from urging their patients to terminate pregnancy, to simply sending them out the door with no resources in hand other than a list of potential complications.

The current termination rate for Down syndrome pregnancies is 90%. Yes, that’s 90%.

I don’t fault only doctors for this astounding statistic. But it’s undeniable that they are in a position to influence women’s decisions. And since the ACOG released its new protocol, their potential influence regarding DS pregnancies has dramatically increased. Since screening is now recommended for all pregnant women, regardless of age, an unprecedented number of positive prenatal diagnoses will be determined this year. And that means an unprecedented number of women may face a life-or-death decision with inadequate information.


Moving DS screening from the second trimester to the first has several potential benefits, IMO:

Women who are determined to terminate a DS pregnancy, no matter what, will do so much earlier on. As opposed as I am to abortion, I’d much rather women terminate a 12-week embryo than a 20-week fetus.

Women have more time to decide whether they want to terminate. Previously, many women had only a week to make that decision (depending on their state’s laws). I think a portion of women would opt against termination if they’re not rushed.

Women who refuse to terminate will have more time to adjust to the diagnosis before the birth.

But there’s a very big potential problem here: At 12 weeks, women are not as invested in their pregnancy as they are later on. They haven’t felt fetal movement yet. They’re not showing yet. Of course, many women are attached to the growing life within them from day one (the emotional trauma women typically suffer upon miscarriage proves this point). Still, I think the earlier timing will increase the percentage of abortions.

And that goes for fathers too, on both counts. I’m not suggesting that dads don’t care about their unborn child before they can see or feel evidence of its existence. But I think that 12 weeks into a pregnancy, men are more likely to opt for abortion.

And why am I so concerned about these abortions?

I am opposed to abortion in general. Yet my worry here goes beyond abortion-in-general. Parents who end DS pregnancies want to be parents. They’re simply scared of being parents of a certain kind of child. But this fear, although poignant and strong, may be short-lived.

This I know from experience. When my son Thomas was diagnosed with DS shortly after birth I had many resources to draw upon: my testimony, supportive friends and family, even specific spiritual experiences which helped me prepare for this event. But even so, I was terrified. There were times I wished I could make everything go away–the Down syndrome, yes, but even my son himself. And so, while I don’t think it’s right to terminate a pregnancy because of Down syndrome, I understand the fear that drives parents to do so. It took time for me to feel comfortable with Thomas–time that parents considering abortion don’t have.

Consider this: It takes time to get to know any child. Instinctual, protective love is often there from the get-go, but person-to-person love takes time, interaction, experience. Most weighty problems with our kids don’t come up until we’ve had years and years of bonding with our child–and they’re tough situations even then. What might happen if all children were born with their future problems tattooed on their foreheads? Or worse, if all difficulties could be diagnosed in utero? This baby will have a drug problem. This baby will get cancer as a teenager. This baby will be gay. Would the human race survive?

I don’t deny that Down syndrome brings challenges and outright difficulties. But of the hundreds of parents of children with Down syndrome that I’ve become acquainted with, none of them–NONE of them–would give their child up. Some of them might have done so prenatally, if they had had a diagnosis then. But not now. Not after getting to know their child. The gap between what most parents feel at first, and what they feel later on, is so significant and so widespread that I edited a book about it.

And so, I’m sad. I’m sad that so many parents opt out of having an experience that, in most cases, ends up being beautiful–for the child, and the family. And I’m particularly sad that many parents make this decision after being given scanty, outdated, or overly negative information.

A little knowledge does not bring freedom–it hampers it.

Sens. Brownback and Kennedy have recently reintroduced the Prenatally and Postnatally Diagnosed Conditions Awareness Act–a mouthful of a title for a bill designed to improve the prevailing clinical atmosphere, based on Skotko’s seven-point “prescription” for doctors delivering a diagnosis of Down syndrome.

I hope you’ll contact your representatives and senators, as I will, and tell them you want this bill passed. Remind them that a little knowledge is a dangerous thing–for patients, and for doctors. Yes, parents facing a diagnosis of DS deserve to know what might go wrong with their unborn child–but they also deserve to have that information delivered with the greatest possible accuracy and sensitivity.

They also deserve to know what might go right. But sadly, there’s no bill on the docket for that.

This is my final guest post. Thanks, Nate, for the invitation to blog here. And thanks to all of you for the great discussions!

84 comments for “A little knowledge

  1. This protocol is supposed to increase women’s reproductive freedom

    That’s the rub, isn’t it? There’s no real medical reason for these tests, but the Gynecologists and Obstetricians are worried that some families might miss their chance to abort thir Down child through ignorance. Meet the new eugenics, better than the old eugenics.

    Your worry about folks getting pressure to abort from friends and family and even doctors is a real one, KLS. When Betsey went into a coma, some of our doctors pushed us to pull the plug, even though they agreed she would probably come out of it–(but she’d be in pain and disabled, was their reply when we brought this up). We got into a couple of nasty confrontations.

  2. Thanks once again for an insightful post. It saddens me to think of how little we humans value each other’s lives, even if they are an incredibly challenged life.

    Adam, you are right on. This is a threadjack, but this type of thinking reminds me of the movie “Gattaca” with Ethan Hawke and Uma Thurman. If you’ve seen it, you know what I’m talking about. If not, go watch it. It’s a little slow, but it is really thought provoking.

  3. Yes, really. I know I seem mild-mannered and inoffensive but appearances can be deceiving, especially when you’re trying to persuade me to remove my child’s airtube and watch her strangle to death.

  4. When our first child was born, my wife’s OB/GYN took the time to discuss whether we wanted to do several tests. She politely inquired whether we wanted to know if our then-unborn child had any debilitating or life-threatening defects. She essentially did this to ask if we wanted to know that information in order to determine whether we would continue the pregnancy. She was extremely tactful and professional. Knowing her somewhat, I am fairly certain she is not an opponent of abortion. However, after receiving our answer (we didn’t do most of the tests), she confided in us that she has to be very careful with patients who would choose to terminate the pregnancy if there was a defect like Down Syndrome, primarily because they often make a decision based on an emotional, fearful reaction. She said they often feel like they have to make the decision immediately, before it is “too late.” I feel like that doctor did an admirable job in explaining the situation to us, but not all physicians are so careful and considerate.

  5. “There’s no real medical reason for these tests, but the Gynecologists and Obstetricians are worried that some families might miss their chance to abort thir Down child through ignorance.” I find this unnecessarily inflammatory. That is a totally unfair assumption. In our medical culture, generally speaking, more information is better. There are serious issues that some people would rather know sooner or later, those who abort and those who would never consider it. Why vilify the OBGYNs?

    Kathryn, I find your essays about your son and your experiences very moving. And, kudos to your fine work with Segullah. I agree that this is a sensitive issue and that it is the physicians responsibility to inform a patient of all available options. However, in my experience, we have unrealistic expectations of physicians.

    Just a few points of clarification. Brian Skotko (who did his study as a medical student) was interviewing women who received a post-natal diagnosis. Post-natal counseling is something completely different than pre-natal counseling. While the same attitudes and lack of knowledge may apply, obviously abortion is a non-issue after the child is born.
    There’s also an article in Obstetrics and Gynecology (Jan 2006) that mentions physicians feel that their own training regarding genetic counseling is inadequate. So, maybe this is a systemic problem, one that would have to be adressed by the ACGME, the body that accredits training programs. If it was made an aspect of physician competency, then it may improve their ability to deliver objective information.

    I would be surprised to find a physician that has malintent when it comes to genetic counseling. Ideally, a physician would give advice without his/her biases but reality is that everyone walks into their profession with their own experiences, religious beliefs or lack thereof, and personal biases. Regardless of what the physician says, many people have years of biases against people with disabilities that informs their own reaction to their diagnosis of DS. That is definitely what we should be working against.

    I have been offered prenatal testing on my last three pregnancies and have refused. But I would not want to deny someone else that option.
    (Climbs off soapbox)

  6. Another sickening reminder of society’s “advancing science and declining morals”. We should prohibit doctors from diagnosing DS before birth, at least until our abortion laws are morally sound. The 90% abortion rate against babies with DS shows people can’t be trusted with the information (as in Thailand, where the government wisely prohibits doctors from diagnosing the sex of unborn babies to control the abortion rate against babies with the undesirable XX chromosomes.) It’s unthinkable that ACOG would recommend universal first-trimester screenings to learn a baby’s sexual orientation (were that possible), even though many parents would undoubtedly like to know, because ACOG would know the policy would facilitate discrimination on the basis of sexual orientation. It’s heart wrenching to know that our society has highly-educated people — medical doctors, for heaven’s sake — willing to facilitate discrimination against the disabled.

    With this issue pro-life and pro-choice advocates find common cause. We need an ad.

  7. I’d like to know a little more about whether geneticists routinely do this sort of counseling; when we found that our first baby had a fatal genetic defect, we happened to be there at a time when there was no genetic counselor, and we ended up talking directly with the geneticist. It was pretty clear (so my husband says, I wasn’t very clear at the time) that he was uncomfortable in the counseling role, while the actual counselors were a lot better at it. Do most perinatologists have counselors on staff? It does seem to me to be two different jobs; there’s knowing the myriad technical aspects of diagnosis and so on, and there’s actually talking supportively with parents about their choices. It would probably be pretty hard to do both well.

    I do think that a lot of people terminate out of sheer fear; which I can understand, but still deplore. I wish they wouldn’t justify it by saying that it’s more humane to the child, though.

  8. That is a totally unfair assumption. In our medical culture, generally speaking, more information is better. There are serious issues that some people would rather know sooner or later, those who abort and those who would never consider it. Why vilify the OBGYNs?

    Probably because 90% of babies with Down Syndrome are aborted and abortion is the only “medical procedure” that there is for “treating” unborn babies with Down Syndrome. Yet in the face of this, ACOG has decided to expand prenatal testing.

  9. I have hesitated to make a comment on this post for fear of being lambasted for my opinion, but I feel that I must say something. Please do not rush to judgment of those who choose to abort a fetus that has been found to have Downs Syndrome — you never know what their situation is and what their reasons are for their decision. I realize that some, upon having a positive test, may rush to abort based on fear, and often the tests give false positives, causing unnecessary angst.

    Please allow me to share my experience, which may hopefully give a different perspective. My first son suffered a brain injury at birth, and subsequently is severely mentally retarded with many attendant physical abnormalities. He is classified as “medically fragile.” For the year after his birth, my husband and I went through an extremely challenging period of our lives. I won’t recount all of our experiences, but we were left emotionally, spiritually, and financially devastated. We lived for a time with his parents just to get back on our feet. At that time, a woman in our ward gave birth to a son with Downs. She had 5 other children, and her husband was unemployed. She spent countless weeks at a distant hospital with him for open heart surgeries to repair heart defects due to Downs. My husband and I had walked a similar road, and we felt their pain.

    After a period of time, we felt like we had been healed in many ways and we desired to have more children. We felt that we needed to have another child if nothing else but to have the experience of raising a normal child. So, we took a huge leap of faith and got pregnant. I went through extensive testing during the early weeks of my pregnancy to determine what may have led to my first son’s birth injury (nothing explained the eclampsia –there were no pre-existing conditions), and I had the testing for Downs. After careful and heartfelt thought and prayer, my husband and I made the decision to terminate the pregnancy if the fetus tested positive for Downs. It was a horrible, horrible decision to have to make, but we simply could not have handled having another disabled child. We knew that in addition to the mental retardation associated with Downs, there were high probabilities of heart defects and other conditions such as leukemia. It was an agonizing 3 weeks until the tests came back negative. I can’t describe the mental torture I went through knowing that I may have to terminate the pregnancy, and at the same time knowing that my marriage, my faith, and my mental health may not have survived another disabled child.

    Thankfully, blessedly, my second and third children were born normal and healthy, with very controlled pregnancies and planned c-sections. I feel that having more information about the genetic status of the fetus, whether it be Downs or any other condition, is a good thing. If I had not had the experience with my first son, and my second tested positive for Downs, I may have made a different decision.

  10. The church says that was wrong, Xena, and I’m with the church. I’m not interested in hunting down individuals to condemn them, and your personal situation certainly inspires sympathy, but revelation and the life of the child trumps the pain that not being absolved by strangers on a blog might cause you. Aborting children because they have Down syndrome is a wicked thing to do. I’m glad God spared you from going through with your plans to commit a sin like unto murder.

  11. I’m not asking for absolution, Adam, I’m sharing an experience. Hopefully God will forgive you for being so judgmental of others.

  12. And I stand by the decision that I made at that time in my life. Only God (and certainly not Adam Greenwood) knows my heart, my intentions, and my circumstances.

  13. Adam,
    You mention revelation: while I don’t have anything invested in Xena’s (or your) decisions, would your response be different if Xena had asserted a revelatory confirmation that aborting the fetus would have been the right thing to do?

  14. Lupita, you make good points, almost all of which I agree with.

    I don’t want to deny anyone the opportunity for prenatal testing either.

    I think doctors, as a group, reflect the general societal approach towards DS. They’re not more evil per se. But since they’re in a position of strong influence, the flaws in their perceptions are particularly dangerous.

    I don’t think any doctor has deliberate malintent, but it’s there nonetheless. I define malintent as a doctor unduly pressuring a patient against her expressed wishes. I have a whole bunch of witnesses to that effect.

    I agree that doctors need training. That’s the point of my post–to draw attention to this fact.

    I agree that the larger problem is society’s view of people with disabilities. Indeed, this is what needs changing. But that’s a bottom-up change, not a top-down one.

    Recently, a national DS org was a finalist in the American Express Members Project–this was a competition between nonprofit orgs wherein AmEx cardholders voted on which project should receive $5 in funding. In the comment thread on the project webpage the DS org got slammed for wanting money to raise DS awareness. It was considered a waste of time by many people who commented. “Use the money for something important” they said.

    So, while I agree that there’s a much larger underlying problem, there will (probably) never be legislation to address it. Change will only come through the grassroots advocacy efforts of people who have friends and family members with DS. And they’re working their butts off, that I can promise.

    As to the matter of prenatal vs. postnatal diagnosis–you are right. My wording was not very clear about the implications of the Skotko study. There’s not direct proof here of inadequacy at the time of prenatal diagnoses. But any lack manifest during a postnatal interaction will be exponentially more dangerous in a prenatal setting.

    As for “more information is better”–I would generally agree, if it is balanced, accurate information that shows both sides to the coin. Information can help, and hurt. Care must be taken to support the individual receiving potentially devastating information. Oh, the stories I could tell you.

    Lupita, I appreciate these remarks of yours. I hope I don’t sound defensive here–just trying to clarify my perspective on these points. Thank you for speaking up.

    And that goes for you too, Xena. Yours is a heartbreaking story. My intent with this post is not to condemn people who choose termination, but to call attention to the ways in which I feel the clinical climate contributes to the extremely high abortion rate. Your situation is an extreme one, and I can only be grateful that I didn’t find myself in a similar situation.

    Dangermom, I don’t know the answer to your question about counselors working with perinatologists. A great point there. And I, too, feel sad when people assume they’re doing their unborn child with DS a favor by terminating the pregnancy. I am convinced that with adequate education, few people would feel this way. One of the moms who contributed in my book came very very close to terminating because she felt it was what a truly loving mother would do–spare her child suffering.

    Peter, I am so glad your wife had a sensitive doctor. I have heard about many others, as well. Not all of them are clueless, thank goodness! And I think with training, many doctors could make great strides in their bedside manner. It would also help if the spectre of wrongful birth suits wasn’t constantly looming. Doctors could certainly cross the line of propriety by unduly influencing patients NOT terminate pregnancy, but I think some doctors err on the opposite side.

    Matt, you’re right–this issue crosses political boundaries. In fact, I think the most significant stories in my DS book were from pro-choice women. They’re in a position to speak to women who are not categorically opposed to abortion, and these are the women who are most vulnerable in a clinical setting.

    Adam, I can picture these nasty confrontations you mentioned. So sad.

  15. I just read the comments that got posted while I was writing mine. Speaking of nasty confrontations–this is not the place for them.

    Xena, I’m grateful you shared your experience. You have my deepest sympathies.

  16. Why must everything be so cut and dried Adam? Xena’s situation does more than merely ‘inspire sympathy’, it inspires admiration for its common sense. I’ve personally seen at very close quarters what happens when people take on more than they can handle in the way of children requiring special care. The results can be enormously costly – nay, horrific – for the entire family. It can actually destroy the family, and I’ve been under the impression that family is what the plan of salvation is all about.

    If prior to deciding to have a second child Xena and her husband prayed and made plain what course they were going to take, then that’s a clear case of working together with God on the matter, and putting the decision in his hands. I’ve had it explained to me by LDS friends that God sometimes sends his choicest spirits to earth merely to receive a physical body. Had the child of Xena and her husband been DS – in light of what they’d said to God in their prayers – why couldn’t this have been God doing just such a thing?

  17. Thank you, Kathryn, for shining a light on this topic, which is often difficult to discuss.

    I’d like to add another “a-word” to the conversation: adoption. It is my understanding that there are families waiting for children with Down sydnrome, which shows something those of us who are parents already know: our children are gifts.

  18. Hopefully God will forgive you for being so judgmental of others.

    Only God (and certainly not Xena) knows my heart, my intentions, and my circumstances.

  19. while I don’t have anything invested in Xena’s (or your) decisions, would your response be different if Xena had asserted a revelatory confirmation that aborting the fetus would have been the right thing to do?

    Interesting question. I’m very sceptical of revelation that contradicts what we’ve heard from the leaders God has appointed for us. In my opinion, if someone had a genuine revelatory experience along those lines they would still respect the general revelation by keeping it to themselves.

    The prophets say that abortion is like unto murder except in certain narrowly defined circumstances, where they ask us to find out for ourselves. Children with Down Syndrome is not one of those circumstances.

  20. Xena’s situation does more than merely ‘inspire sympathy’, it inspires admiration for its common sense. I’ve personally seen at very close quarters what happens when people take on more than they can handle in the way of children requiring special care. The results can be enormously costly – nay, horrific – for the entire family. It can actually destroy the family, and I’ve been under the impression that family is what the plan of salvation is all about.

    All of these arguments would justify infanticide equally well.

  21. I generally agree with KLS’s point. Doctors sometimes pressure people with disabled children to abort them and something should be done about it. I didn’t want to turn this into a thread condemning people who abort their children if they are disabled but I was not going to keep silent when those people tried to justify it.

    But we’ve threadjacked enough, now, so lets get back to KLS’ topic.

  22. Four short comments only:

    1) Thank you, Xena, for the courage to add your persepctive and the eloquence to do so the way you did.

    2) Per Kathryn’s comment, this truly is not the place for a nasty confrontation. Disagreeing is one thing; essentially calling someone a murderer in their heart is quite another. (Please don’t nit-pick the wording. Essentially, that’s the charge.)

    3) The Church does NOT equate abortion with murder. It allows for exceptions, to be decided by the PARENTS through prayer and counseling, and one of those exceptions is the health and life of the mother. Xena’s soul-wrenching struggle seemes like EXACTLY the type of painful decision-making the Church requests – and to carte blanche reject it as like unto murder is so over-the-top that I had to read it twice to believe what I was reading. I don’t want to add to a nasty confrontation, but, as an ecclesiatical leader myself, if Xena had come to me to explain her anguish and their ultimate decision, I would have had a hard time justifying a condemnation of her choice based on the handbook – and that is what I am required to do as a leader. I am not to impose my own belief, but instead rely on what the Church guidelines are and allow Xena and her husband to govern themselves in the light of those guidelines.

    4) Xena opened her heart and shared an intensely personal experience in order to add a persepctive that we often don’t hear – specifically because it is so painful and makes her so vulnerable. Each opinion (supportive and dismissive) has been offerred; I hope we can leave any charges and countercharges behind and focus instead on decrying the obvious trend to mindless abortion of disabled children before birth – while still maintaining the Church’s allowance of exceptions. This issue, perhaps more than any other, is an emotional and polarizing one. I hope we can address it constructively and charitably – again, upholding the actual standard of the Church.

  23. I’ll start a new post so those who want to argue that killing a child with Down Syndrome is justified can argue that, and I can oppose them, without threadjacking KLS’ topic.

  24. “I’m glad God spared you from going through with your plans to commit a sin like unto murder.” Wow. Did someone really just say that?

    Xena, your comment was wrenching. I’m so sorry that you had to go through such an ordeal. Yet another clear illustration of how complicated this issue remains, especially when someone engages in “careful and heartfelt thought and prayer”.

    Kathryn, thank you for your thoughtful response and clarifications. I don’t find you defensive at all and I certainly hope that I didn’t come off as offensive. I have learned so much just from reading your experiences and your willingness to avoid sugarcoating your experience resonates with me. Any physician who is pressuring a patient, especially against her expressed wishes, is most certainly in violation of ethical codes. I agree that a 90% rate of aborting fetuses prenatally diagnosed with DS is offensive and worth fighting. I am for changing the system but not vilifying physicians who, to a great extent, are doing the best they can with the knowledge they possess. Thank you for giving us all something important to ruminate upon.

  25. #22 “All of these arguments would justify infanticide equally well.”

    Perhaps. Though infanticide is more likely where the birth of the child has been less carefully thought out and prepared for.

    #18 Adoption. That there are people waiting to adopt DS children hadn’t occurred to me. What a lovely thought.

  26. madera verde, my apologies– I deleted your duplicate comment and somehow deleted the original as well. Here’s what you said:

    #19 – Dang you beat me to it.

    #17 – Carful Kyle. Your logic could also could justify or even praise people for killing children before the age of eight as they would be heirs to the celestial kingdom. The bottom line is that it is God’s perogative to decide when it is time for us to go, not ours.

  27. Thank you, jennifergg, for these remarks, and for the link to the prenatal study. Re adoption, you’re right–in the US there are over 100 families on a waiting list to adopt children with Down syndrome.

    Lupita, thank you. I find our exchanges a pleasure.

    Ray, thank you. I agree 100%.

    Kyle (27): as for “carefully thinking out and preparing for” the birth of the child–wouldn’t you agree that parents who do so will acknowledge the risk they are taking by inviting conception? It’s a roll of the dice for everybody. One could argue that parents who don’t want to have a disabled child should not have any children, because the risk is always there. I’m not claiming that viewpoint as my own–I think it’s too much of a blanket statement. But if we’re going to speak about common sense, I think it’s an important point to consider.

  28. Adam, I will try to say this in the proper spirit, but I also will try to be direct. Again, I do NOT want to turn this into a nasty confrontation, so I will not comment further about this particular case.

    You are talking to people on this blog who, by and large, are dedicated, active members of the Church. We aren’t apostate, and we aren’t out to ignore the Church’s standards. It doesn’t help a discussion to imply that we are ignorant or willfully rebellious or heartless or in danger of damnation or whatever, simply because we try to uphold the incredibly painful process the Church requests when contemplating such a terrible step.

    I have NO problem whatsoever with your stance against abortion FOR YOURSELF. In fact, I have no problem whatsoever with your stance against abortion as the default from which all decisions should be made. I think the default should be birth, not abortion. Period. I abhor the assumption that any child should be aborted simply because of a disformity or disability. However, I have NO right nor responsilibity, even within my ecclesiastical duties for those for whom I have stewardship, to require that anyone else forfit their decision-making responsibility in their own unique situation and apply a generic, standard that the Church itself does not impose. We can interpret the exception concerning health and life in any number of ways, but the Church has chosen not to do so. If the Church has chosen not to do so for its individual members, neither should I.

    Please don’t make assertions that imply I and others are morally corrupt and consenters to murder simply because we are unwilling to condemn a choice that appears to have been the result of deep and painful and prayerful soul-searching, exactly as the Church requests these decisions be handled.

  29. Adam (21),
    Like you, I’m skeptical that someone would receive such a personal revelation and, if it were I, I would hesitate to follow. I don’t, however, rule out the possibility that God could make such a revelation against general standards (cf. Nephi and Laman; Abraham and Isaac; etc.), and it doesn’t necessarily follow that the person who received such personal revelation would not be permitted to share it (cf. Nephi again).

    Like I said, though, I agree that, absent such revelation, aborting a child who has Downs goes against Church teachings, and I would be skeptical, if I received such a directive.

  30. #27 Yes Kathryn, I agree with you completely .But in the specific case discussed earlier in this thread there was a situation where two parents ready for another child were clearly not at all ready for another child requiring serious special care. They’d already been through the mill. It was difficult to think how ‘general principles’ might apply to this unique situation without being peremptory or superificial about it.

  31. Ray,
    Do you think that the health and life of the mother was threatened in this case?

    An interesting question I have related to this is; does the church’s standard of possible exception in case of health and life of mother apply post-partum? I had always assumed that it meant possible complications with the preganancy or the birth itself, not in raising the child. I had never thought of applying it to afterwards – i.e. raising the child.

  32. As much as I’d like to regard Adam as merely callous and insensitive, he’s offering a fairly close restatement of the church’s position on abortion, as it can be found on the lds.org website.

  33. Here’s the text from the website:

    The Church of Jesus Christ of Latter-day Saints believes in the sanctity of human life. Therefore, the Church opposes elective abortion for personal or social convenience, and counsels its members not to submit to, perform, encourage, pay for, or arrange for such abortions.

    The Church allows for possible exceptions for its members when:

    • Pregnancy results from rape or incest, or

    • A competent physician determines that the life or health of the mother is in serious jeopardy, or

    • A competent physician determines that the fetus has severe defects that will not allow the baby to survive beyond birth.

    The Church teaches its members that even these rare exceptions do not justify abortion automatically. Abortion is a most serious matter and should be considered only after the persons involved have consulted with their local church leaders and feel through personal prayer that their decision is correct.

    The Church has not favored or opposed legislative proposals or public demonstrations concerning abortion.

    I don’t think people in Xena’s kind of situation opt for abortion out of “personal or social convenience.” More like personal survival. Physiological life/health is not the only kind. This is a huge grey area, and I’m not interested in trying to define it–it can only be navigated on a case-by-case basis, and only by the people directly involved.

  34. Adam, I usually admire your willingness to speak your mind, even when I happen to think you’re completely wrong. I appreciate that you try to stand by your principles. I hope that at some future time, I will also be able to respect you for your remarkable ability to express those principles in a way that doesn’t heap shame and condemnation on those who’s actions you disagree with.

  35. It’s my understanding that Xena contemplated the possibility that she might choose abortion; only this never came to pass. She was not given the opportunity to parent a child with Down syndrome.

    Too, it’s a mistake to assume that all disabilities are the same, or that all children with Down syndrome are the same.

    Which brings me to Kathryn’s post: assuming Xena had been given the chance to parent a child with DS, and that she learned about this ahead of time, and that the diagnosis was delivered to her in a way that shared the real joys of parenting such children, and also the possibility of support and help, and finally the choice of adoption, in addition to the black-and-white “solution” of termination?

    I suspect the anguish she felt for those long three long weeks might have been lessened; maybe even nonexistent.

  36. “…it can only be navigated on a case-by-case basis…”

    I appreciate that Xena went through a difficult time and made hard decisions, but I’m a little confused at how having the financial/emotional stakes be higher than they might be in a normal DS baby makes the decision to abort any more justifiable. Surely our doctrines don’t change based on the fact that their application might result in difficult challenges for the member. And if they did, I think we’d be in serious trouble as it relates to abortion, as I assume (or at least hope) that any believing member contemplating abortion would be doing so because the consequences of keeping a baby seemed very difficult.

  37. Parents who kill a child because it has Down syndrome deserve nothing but scorn. It’s awful that many parents kill their baby because they feel too guilty placing it for adoption. Decent people do not kill children they are unable to care for, period. They give them to people who can.

    “I agree that the larger problem is society’s view of people with disabilities. Indeed, this is what needs changing. But that’s a bottom-up change, not a top-down one.”

    Kathryn, it would be wonderful if people were no longer biased against those with Down syndrome, black skin or XX chromosomes, but I think it’s a grave mistake to oppose top-down measures like Thailand’s done to prevent people from aborting girls. In the same way, it was right for the government to prohibit slavery from the top rather than wait for racial equality to percolate from the bottom.

  38. Do those expressing support for Xena think that if someone presented the potential challenges they’d face if they raised a black child, as Xena did for Down syndrome, that it would be morally acceptable to kill the baby because of its race? Or is what we’re seeing really not about the mental state of the particular mother (who could in theory suffer as much mental trauma from her child’s race as from her child’s Down syndrome), but an acceptance of bias against people with Down syndrome?

  39. Matt (42), in my statement I was agreeing with Lupita’s assertion that the real problem here is social attitudes toward people with DS, pointing out that we can’t use legislation to control these attitudes, and saying that we can and should use legislation to minimize the potential negative impact of information garnered through prenatal testing.

  40. Matt (43)–Xena has my sympathy, but not necessarily my endorsement. I can’t support or condemn her decision, for its morality is based on information I’m not privy to (and cannot be privy to).

    Your example here doesn’t work for me as a parallel situation, because while race can present challenges for a child and a family, these challenges cannot amount to a burden of care like that caused by some disabilities. Also, the race of a child is determined long before it’s conceived.

  41. I had access to some interesting information. It came from active LDS physicians in the Salt Lake area who cared for or else performed abortions on the unmarried teenage daughters of active LDS members in the early 1990’s. If the general authorities had grand-daughters who happened “to find themselves in a family way,” they would likely be in this group. I only serendipitously viewed the numbers, not the individual details. Behind each number was a real person struggling with these issues and making agonizing choices.

    When a LDS girl got pregnant at age 10-14, the pregnancy was often electively terminated. The risk to the girl’s health at that young age was real but not absolute. Most of the time (I’d guess 90%) they would have been able to complete the pregnancy physically with good medical care. Almost all of them were white so adoption, if desired, would have been certain. I doubt very many of them were due to rape, incest or severe birth defects. The risk to the girl also included disruption of education and social-personal development during and after the pregnancy. These presumeably faithful LDS people made this decision hundreds of times. I am telling you I know for a fact that active faithful LDS physicans with temple recommends performed hundreds of abortions on girls in this young age group.

    When the girls were about age 15 a transistion occurred. Beyond to age 16-19 the number of abortions performed by LDS physicians on pregnant girls of this age fell drastically, to near zero; even though the actual percent of girls in this older age group who were getting pregnant increased significantly.

    So it seems that (ten years ago in Utah) a 13 year old otherwise healthy LDS girl who got pregnant often had an abortion while a 16 year old similar girl had the baby. (Or she went somewhere else and had the abortion under the hands of a non-LDS physician). If we contemplate the biological, personal, spiritual, and social differences between most 13 and 16 year old girls, it gives us some idea of how others have defined the directives given to us by our leaders and negotiated this difficult grey area.

    In this context, with the presumption that most active LDS physicians and LDS parents of pregnant teenagers are trying their best to do what is right, and with the added presumption that the church leaders have close friends and relatives who practice medicine and deliver babies, I think we are forced to conclude that the decision made by Xena #10 is well within the boundary of acceptability. Those who are critical of her decision do so from the perspective of well-intended idealism but also from lack of actual real-life experience in these matters.

  42. verrrrrrrrrrrrrrrry interesting, Mike. Thank you for sharing this.

    I think it’s pretty safe to say that 10-to-14 year old girls who are sexually active are being “acted upon.” Maybe not literally held down and raped, but strongly influenced by outside forces/individuals. Generally speaking I believe the level of accountability changes with maturity, and I’m assuming that accountability played a factor in these cases. But in addition, I think these examples show an expanded application of “life and health.”

    I have no interest in challenging Church policy; I am a defender of it. But in many matters, including this one, there’s an area between black-and-white principle and real-life application that remains ambiguous.

  43. p.s.

    Here’s another real-life example of the unusual things that can happen in the grey area:

    A high-school-age young woman had an abortion. She was sexually abused as a child, but her pregnancy was not the direct result of this abuse. When she confessed to her bishop, he consulted with the Stake Presidency and it was determined that no disciplinary council regarding the abortion was necessary. Apparently she was not held fully accountable because of her background.

  44. Kathy, this isn’t critical, but as with Down syndrome, a child’s race is determined at conception.

    Mike, that is very interesting. I think that if we explored the reasoning of those involved, we’d find a belief that young and pre-teens can’t, by definition, consent to sex, and a belief that pregnancy poses them a severe health risk. Because none of the factors you mention as being important in the decision to permit young girls to have abortions (age, disruption of education, social-personal development) were mentioned by Xena as factors in hers, there’s no basis for your conclusion that Xena’s circumstances are similarly acceptable.

  45. Matt, I don’t mean to bicker either, but I said “long before” in regards to race. Although that’s not entirely true–some people choose their partners just minutes in advance. *wink*

  46. Matt,

    I seriously doubt that there is data on LDS Physicians performing abortions on active LDS girls. His comments sound off the wall to me. GA Granddaughter comment is further proof.

    How would such data be compiled? Who would compile it? I also frankly find it hard to believe that active LDS Physicians are performing hundreds of abortions. Those that did so would be subject to church courts if discovered by their local leaders. All my MD buddies who are LDS say that they have never performed an abortion and opted out of the training in Med school

    If this is true it needs a verifiable source.

  47. Kathy: The most compelling essay that I’ve read about abortion is Sister Emma Lou Thayne’s “On the Side of Life” in “All God’s Critters Got a Place in the Choir.” It’s filled with hard, rich experiences and reflections and ends:

    “All I could think then, pray now, is this: dear Lord, give me the heart to understand, the wisdom not to judge, the loving kindness to know what the poet Gewndolyn Brooks meant when she wrote, “That even in my deliberateness I was not deliberate.’ Where do I stand on abortion? On the side of life. For the mother as well as child. Not bewildered by not deciding exactly where I stand except in reverencing both the life and the agency that the Lord alone gives to decide anything at all. And I go gratefully, ecstatically, to welcome in another grandbaby of my own.”

    I wish I had permission to reprint the whole essay on my blog . . . For the sake of women as well as children, I wish we could talk about this with a little less heated rhetoric. You raise some excellent points about the need for more education, more support, and less fear. If were a woman faced with this dilemma and stumbled on to this post — because people google when they are scared and hungry for information — I would be better off if I read the post and left the comment section alone.

  48. jimbob (40)–I simply meant that there’s some ambiguity in application, and no firm parameters can be drawn in this grey area. I’m not willing to judge whether Xena’s plan, if executed, would have been approved by God or the Church.

    Deborah (52)–I’ve read that essay. It’s beautiful. Thank you.

    jennifergg (39)– WELL SAID. That’s what I’m trying to get at here–thank you for getting me back on track.

    The tragedy I’m highlighting in this post is the unnecessary pain and suffering caused by the current clinical climate.

    Could doctors possibly be required to present positive, reassuring info along with the list of complications, rather than only negative info in a “sensitive” way? It doesn’t seem likely, I’m sorry to say.

    Copies of GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives were distributed at the ACOG conference in May, and we will distribute more at the conference of the National Society of Genetic Counselors this fall. I hope this effort will help raise awareness in clinical circles.

  49. “it was determined that no disciplinary council regarding the abortion was necessary”

    From my limited exposure to the process, I’d guess that disciplinary councils were convened less than half the time they were contemplated. (For everything on the list of acts with potential for formal discipline, not just abortion.)

  50. bbell, I don’t buy Mike’s numbers (there are only a handful of abortions on 14-and-unders in Utah every year, and they wouldn’t all be LDS), but to my knowledge all LDS obstetricians perform abortions (many miscarriages require it), and I don’t doubt that abortion is more likely among 10 to 14-year-olds.

  51. Kathy, I think it’s usually due to a combination of the person’s background, gospel comprehension and endowment status. A recent RM would be much more likely to have a disciplinary council for pre-marital sex than would a recent, unendowed convert.

  52. (57) I would imagine so. Thanks for this info.

    (56) I wouldn’t call a D&C after miscarriage “abortion”–the embryo is already dead. Miscarriage is also called “spontaneous abortion.”

  53. Matt, are you saying that there can be a bit of ambiguity in general counsel that requires the person(s) involved in each situation to make an informed and prayerful decision as to the action that should be taken in that specific situation?

  54. Matt,

    My definition of abortion does not include the scenario involving unfortunate miscarriages & D&C’s. When you discuss abortion in my view you are talking about elective abortion.

  55. “jimbob (40)–I simply meant that there’s some ambiguity in application, and no firm parameters can be drawn in this grey area. I’m not willing to judge whether Xena’s plan, if executed, would have been approved by God or the Church.”

    Fair enough. My point is that I don’t think Xena’s factual situation comes anywhere close to presenting a grey area, and that I hope that it takes far more than what she’s describing before abortion becomes an option, if at all (let’s not forget adoption is always an option). But I appreciate that reasonable minds could differ on whether there is some “ambiguity” here, and think you’re doing well moderating a very touchy subject.

  56. Thanks, jimbob. That was thoughtful of you.

    I tend to be protective of people who share such personal experiences. If someone opens up and says “this was my reality,” I’m loathe to jump on them to make a moral point.

    I, too, wish that adoption could be promoted as an alternative to abortion. I don’t think it’s well known that there are many people out there waiting to adopt a baby with DS.

    Ray (59)–touche!

  57. Thinking more about the problem underlying the chilly clinical climate, I’d like to hear what thoughts you all have about grassroots change. What can you do to improve the prevailing social attitude towards people with disabilities?

  58. To respond to Dangermom #8, the perinatalogists at Utah Valley Regional Medical Center have a genetic counselor right there in the same offices as the ultrasound machines, doctors’ offices, etc. We signed in, met with the ultrasound tech and had an ultrasound, met with the perinatalogist and had a little more ultrasound work done with her, and then met with the genetic counselor. Although the perinatalogist answered our questions and explained things, the genetic counselor was able to let us just sit in her office and absorb the diagnosis, ask more questions, explore treatment options for spina bifida, and assuage my guilt that it was somehow my fault. All things that she (the genetic counselor) had trained for, and the perinatalogist had not. I was very grateful for both women and their separate roles.

    Now if we could just get that for everyone, everywhere, not just in wealthy, baby-rich Utah Valley!

    On KLS’s #63, I know that I am trying to explain to my kids and the children I teach in Primary about disabilities. It is by selfish design–I want them to accept my son–but maybe it may make a difference.

  59. “Matt, are you saying that there can be a bit of ambiguity in general counsel”

    Of course. General counsel is, pretty much by definition, ambiguous. The church’s position on acceptable grounds for abortion is quite specific. There are few cases where it would be hard to know whether an abortion met those criteria or not. The greatest ambiguity would be defining “serious” health risk. Down syndrome is clearly not one of the exceptions under the church’s policy: the church only permits abortion due to the baby’s health when competent medical authorities determine the baby won’t survive beyond birth.

  60. So, Matt, just to clarify, the mother’s health means physical health and does not include mental, emotional or psychological health? (I ask that while understanding the difficulty of that type of diagnosis and the obvious possibility of abusing that interpretation.)

  61. Kathryn,
    Thank you for doing this post. It has helped me gain a little more knowledge, particularly about the alarming statitistics and the power of information to perhaps change those. Thanks also for the information about the bill.

  62. Yes, Ray, if everyone were converted, we definitely wouldn’t have this problem. *smile*.

    Keryn, kudos for teaching your Primary to accept differences. And I’m so glad you had a positive experience with your doctors. When I researched my book I heard many glowing reports about doctors doing/saying the right things–I wish we could get those doctors to train the clueless ones.

    Here are a couple of snippets of women’s experiences, from my book. What bothers me most about these stories is the clinical assumption that the women will want to terminate.

    Because I was over thirty-five, my doctor had advised me to have an amniocentesis. So I’d made an appointment for the prenatal test that was to determine whether my baby had a chromosomal abnormality or spina bifida. I got as far as the ultrasound. Just before the doctor started the test, I changed my mind. I told the doctor I didn’t want to risk a miscarriage.

    “Well, your chance is one in one hundred that you’ll have a baby with Down syndrome,” she said. “I’ve had ninety-nine other women in here this month and none of their babies had Down syndrome. You might be the one.”

    I had been ambivalent about the amnio from the start. Driving to the appointment, I’d told Phil that I didn’t want to terminate the pregnancy no matter what the amnio revealed, and he’d agreed. We’d planned to have a second child, and there was no going back.

    “Even if the baby has Down syndrome,” I told the doctor, “I won’t terminate the pregnancy, so what difference does it make?”

    “Well, that’s what everyone says,” she told me. “But they change their minds when they get the test results.”

    I was offended by her flippant attitude toward my baby. “Well, I’m not changing mine.” And we left, clutching the ultrasound photos of our beautiful baby.


    “Your son has a bright spot on his heart,” the perinatologist said as she moved the ultrasound wand over my belly. “Did you have an amniocentesis?”

    “No,” I said.

    “And no blood work?” She shook her head with great displeasure. “At your age (thirty-eight) you should have had one earlier in the pregnancy, in case you need to terminate.”

    I almost threw up. “What?”

    “Well, that is a soft marker for Down syndrome. With your age your chances go to one in sixty-nine. You should have an amniocentesis tomorrow. How about 9:00 a.m.?”

    I left, feeling sick. I crawled into bed and cried for what I thought was all night.

    When I showed up the next day, the perinatologist told me not to worry about miscarriage. I felt the outcome was in God’s hands at that point.
    “This is a FISH test. The results will come back quickly; you’ll have a week to terminate.”

    Why did she keep saying that? No one asked me if I even wanted to.

    A few days later I got up and went to work, fully expecting the results to come in that day as positive for Trisomy 21. Sure enough, the call came, and I immediately went into my OB’s office.

    “Your son has Trisomy 21,” he said. “I understand from the perinatologist that you would like to terminate.”

    “No,” I said, “I don’t know what to do.” I was confused, sick, and hurt. I called Kevin at work. He was dumfounded and extremely upset. He had been so sure that everything was okay.

    I went straight to my pastor and had a two-hour conversation with him. That was what I needed—some breathing room where I could talk through my fears and not make a knee-jerk decision. As my head began to clear, I was angry that the perinatologist had been so aggressive and intrusive in my private affairs, especially at a time when I was so vulnerable to the power of suggestion. My husband was furious as well. It was like the doctor was following some script from a textbook, with zero respect for our individual situation. ‘She wants to terminate,’ I could imagine her telling the OB. ‘Oh, yeah?’ I wanted to shout in her face.

  63. Thank you, Kathryn, for those stories. When we went to the perinatologist, our screens showed that our baby was already dying, so they didn’t put us under a lot of pressure to abort, but it was certainly offered. What really upset me was weeks afterwards, when the genetic testing was returned and we found out what the problem was. The nurse who called invited me to the support group for people who had terminated their DS babies, and assumed that I had as well. I infer that it was a very common thing to do.

    Also, as far as hospital statistics and whatnot are concerned, procedures like D&Es show up as abortions, even though the fetus is no longer alive. According to my hospital, I’ve had an abortion, because I failed to miscarry and had a D&E. That’s what they billed me for, anyway. I figure that’s what Matt meant by his #56 comment.

  64. When we were expecting our last child, my wife’s OB-GYN asked if we wanted any tests done – in case we wanted to terminate the pregnancy. My wife’s age was the reason given. The OB-GYN knew of our religion, so when my wife declined, she said, “I thought so.” She kept the question generic and broad (“any tests”), since she was positive what the answer would be. She then told my wife that she had to be VERY careful to ask most people every single question about every single possible complication, because too many doctors had been sued for not warning the parents about every single possible complication. Perhaps the fundamental fault often is not with the doctors but with the parents and lawyers who avoid responsibility for their actions by blaming the doctors.

    Summary: With few exceptions, absent intentional and egregious mis-information (active or passive) by a doctor, people need to recognize that pregnancy is inherently complicated and risky – and deal with the consequences of their choices.

  65. Perhaps the fundamental fault often is not with the doctors but with the parents and lawyers who avoid responsibility for their actions by blaming the doctors.

    I agree that this is one of the fundamental problems, Ray. Well said.

  66. The comments here I think demonstrate that empathy can be a real hindrance to clear moral reasoning, much as it would be nice if the two complemented one another. I’m not very good at either, empathy or moral judgment, but I wish women like Kathryn, who appear to be good at both, would speak out more clearly in response to comments like Xena’s. Kathryn, with respect, why are you unwilling to engage Xena’s case in a moral judgment? Is it primarily to preserve relationships and maintain a nice tone on the thread, or is it because you think that empathy really does disable moral reasoning?

    On the larger topic, I admit to thorough confusion. Before the technologies existed to diagnose DS and abort DS babies, mothers frequently abandoned or exposed their disabled infants. From what I understand, there is a long history of this kind of behavior, and we appear to be working against a fairly robust human instinct. That’s not to say that this instinct or the behavior is permissible, but just to wonder how to work against it. Instincts are moderately plastic and can be amenable to very strong social norms (of which law is one part), but most of the time instinct will out.

    I also wonder whether the very high rates of aborted DS babies has as much to do with decreased family size as with more powerful technology. If most women expect only to have one or two babies, and invest much more in each individual child, there’s a certain terrible logic to refusing those babies who won’t repay that reproductive investment in the way other children will.

  67. I also wonder whether the very high rates of aborted DS babies has as much to do with decreased family size as with more powerful technology. If most women expect only to have one or two babies, and invest much more in each individual child, there’s a certain terrible logic to refusing those babies who won’t repay that reproductive investment in the way other children will.

    I think this has an enormous amount to do with it. I believe that the population control policy in China, which limits family size, has been a big part of the sex-selective abortion out there.

    Also, Matt E. points out upthread that so many DS babies are aborted because its much less socially stigmatized to eliminate them rather than abandon them to adoption or the care of the state.

  68. Rosalynde, I also agree re your point about family size–certainly parents will feel more despair over a DS diagnosis if this is their “one shot” (or one of two) at getting the kind of child they want. Of course, “reproductive investment” is no less fulfilled by a child with DS than any other. The problem is that relatively few people understand this. I certainly didn’t, before Thomas was born.

    empathy can be a real hindrance to clear moral reasoning

    I thought this thread rather proved that “clear moral reasoning” can be a real hindrance to empathy.

    I am not interested in judging Xena for several reasons:

    –My concern in this thread is how clinical atmosphere influences women’s decisions.

    –Xena never DID anything wrong. None of us, including her, knows what she would have done had the test come back positive.

    –I don’t think it’s my duty to confront Xena about the morality of her plan.

    –I don’t think her plan was a moral one, according to the black-and-white rules. But I maintain that context plays a significant role in morality, and I don’t know the full context here.

    As for instincts–

    All I can say is that my instinct to protect my child was stronger than my instinct to reject him. The tension between the two was very difficult to manage. But I want to point out that more than one instinct exists.

  69. –Xena never DID anything wrong. None of us, including her, knows what she would have done had the test come back positive.

    The general principle behind what you’re saying here is true to a point and God be praised that she, and most of the rest of us, haven’t been put to the test. But the scriptures do refer to sinning by thought and Christ did say that looking on a woman to lust after her was adultery. These scriptures are true to a point also. I think its also undeniable that leading people astray, even in something so minor as asserting as personal experience a proposition that normalizes a sinful act, can be sin.

  70. I was waiting for that one, Adam. And I agree. But we’re not punished by secular or ecclesiastical law for our thoughts (divine law, yes). So I’m even less inclined to jump on someone for a probably-sinful thought than a probably-sinful act.

    I do think there’s places for jumping (and I think you’re an extraordinarily astute jumper) but I don’t think this thread was one of them.

    I don’t think Xena’s comment normalizes a sinful act. I think her situation is an extreme one. But you and I have agreed to disagree about that, no?

  71. Ok, now I understand where thread #4000 came from.

    For what it’s worth, here’s my perspective on this extremely complicated and important issue.

    In my medical training it was hammered into all of us that we NEVER pressure anybody into any kind of diagnostic or therapeutic procedure (except for a few specific circumstances). Furthermore, we are ethically bound to explain fully the risks benefits and alternatives [R/B/As] of any treatment or lack thereof. Failure to do so will result in negligence.

    Translation: Physicians are bound by ethics (and by law—but hopefully the scope of ethics is a little grander than that of law) to explain the R/B/As available to a patient. We don’t have to perform the abortion, and we don’t even have to refer a patient to a physician who would perform the abortion (we can point to a phone book), but we MUST explain the options. That is what we are licensed and paid to do. That includes the LDS doctors over at UVRMC in Provo.

    Recently the NEJM published an article saying the RELIGIOUS beliefs of physicians nationwide influenced their practice of medicine especially with regards to abortion, the morning-after pill, parental consent in reproductive decisions, etc. There are some in the medical community who are very concerned about this bias in medicine. In medicine, to SHOW any bias at all is considered patriarchal (an especially curious term when women’s health is at issue).

    The result is that some feel that women who seek abortions-on-demand are having a very hard time finding doctors who will perform them. Personally I think this is fine, and within the ethical boundaries of Physicians, but there is something that patients must understand about the doctor-patient relationship.

    After I finish my training, and when I finally become a physician I will be required to limit my biases by ethical codes to which I have pledged as well as by law. Failure to do so would be a breach of confidence. We may be asked “what would you do if you were in my place,” and that is a question which physicians are NEVER supposed to answer one way or the other.

    That is why I have a problem with this article by Brian Skotko (who apparently only has a B.S. and may not fully understand the complexities of the Doctor-Patient relationship). As a person who vehemently opposes abortion of viable fetuses (keep in mind that all of us have a spectrum of disabilities, none of us are perfect, and all of us will die), I don’t think it is ethical for a doctor to give an overly rosy picture of a diagnosis for the purpose of preventing abortion. This is negligence.

    As long as abortion is lawful and as long as there are people who seek abortion, Doctors are ethically bound to explain the R/B/As associated with a diagnosis—again, failure to do so is negligence. Of course, explaining R/B/As includes all the positives, (e.g. support groups of DS families, society integration potential, etc.), but; and let me stress this, failure to inform a family of their right to abort, get testing for DS, etc. is NEGLIGENCE. It would be analogous to a police officer’s failure to read Miranda Rights to somebody under arrest. Negligence means fines, law suits, and possible jail time. We are bound by ethics to ‘shoot straight’ with the patient. We cannot put a ‘positive spin’ on a patients diagnosis. It is a thankless job, believe me.

    I agree with Kristine Rosen who said that it is not up to physicians to change the appalling trend of convenience killing of DS fetuses. In a democracy that responsibility lies squarely on the shoulders of ‘The People.’ It is unfortunate that a few judges have placed physicians in this position, but that is the realty of the beast. I hope that I can join with others to stem the tide of this ‘culture of death,’ but don’t expect physicians to do the job which society/culture has failed to do, and which society has required physicians not do [inside the doctor’s office].

  72. Joseph, thank you very much for this. Thank you also for your comment on the abortion thread. I think we understand each other now.

    I can see how physicians are in a bind. I wouldn’t want them to spin a diagnosis one way or another. My focus in this post was the negative spin that the Skotko studies reveal. The 7-point prescription is designed to minimize negative spin while avoiding positive spin.

    An apparently unsolveable problem is that the clinical information is all negative. I wish that along with “90% of parents terminate pregnancy” patients can also hear something like “90% of parents are happy with their child with DS.” (although a stat like this will not mean much anymore, given the new screening protocol). By only offering parents hard science, parents only hear bad news. Every parent facing a prenatal diagnosis should be given contact info for their state’s DS org, so they can hear something else.

    btw, Skotko was a Harvard med school student at the time of the postnatal study.

  73. I wandered over from Kathryn’s blog, and I’m certainly an interested party because I have a 9-year-old daughter with DS, and I’m emphatically one of the 90 percent of parents who are thrilled with my situation (though I wasn’t at first–because I didn’t realize what a joy she would be).

    Comment to Joseph #81, who said, “Of course, explaining R/B/As includes all the positives, (e.g. support groups of DS families, society integration potential, etc.” With all due respect, sir, this is exactly the problem. “All” the positives aren’t limited to things like support groups and early intervention–those things only help offset the negatives. The positives are less quantifiable but very real: the light in her eyes when she achieves a hard goal, the love in her hugs, the delight she finds in music, the openness with which she expresses her emotions, etc. Yes, it’s been hard raising a child with Down Syndrome, but it’s also been infinitely rewarding. More so, if I may dare say, than my typical children who don’t have to work so hard to learn (hence don’t have the same satisfaction).

    When my daughter was born, we were referred to the local DS support group. Our first contact was a series of phone machine messages, and the leader’s very first message to us (delivered with ebullience) was “Congratulations on the birth of your baby with DS!” And she didn’t mean, “On the birth of your baby who happens to have DS,” she meant, “Congrats that your child has DS.” I thought she was nuts. But now I understand.

    I think that’s Kathryn’s point. Parents have a right to that elusive information, as well as information about the potential complications, the option of termination, and the programs that will help manage the child’s challenges.

    As regards Xena, I agree with Kathryn. I could never make a moral judgment towards her; I don’t stand in her place. Rather, I would offer emotional support for the enormous, wrenching experiences she’s had to face (and done so nobly, it sounds like). But my kneejerk reaction is: if she had terminated a pregnancy because of DS, she might have been discarding a great gift. Discarding the very thing her battered heart most needed.

    In response to Matt: I love your ad! I would think it would be fairly easy to create, and with YouTube, distribution would be a cinch. I suspect it would be viral, at least among those of us who know the truth.

  74. Katrina,

    I totally agree. Lets work together to eliminate abortion of healthy down syndrome kids from healthy moms, and help cast off the shackles that bind doctors with these burdensome ethics which prohibits the choice to be overtly positive with parents in these circumstances.

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