Baby, baby, please let me hold him

16 10 2019

Yet another absurd (-adjacent) baby: James Mark!

Like his big brother (my habibi Henry) and cousin (the angry spud Lyana), Sweet Baby James decided to pop in on the world a bit early. This necessitated tubes and lines and monitors, and after a week he’s still in the NICU, but as he’s now merely a “lazy eater” (per his mum), he should be heading home sooner rather than later.

Henry is apparently anxious to meet SBJ, and told his pop he wanted to get a toy for him. (According to my sister, the last thing that household needs is another toy, but whatchagonnado?) Let’s see how long before he wants to send the baby back.

~~~

Two things:

One, I am deeply grateful that my nieces were able to avail themselves of the best that medicine has to offer. There’s more to these birth stories; suffice it to say that what was merely momentarily dramatic could have been tragic had they not been at the hospital.

I get why people are leery of medicalizing birth—goddess knows I’ve voiced my own critiques—but it’s not 1968, women aren’t being knocked out before delivery, and birthing rooms, midwives, and doulas are now an ordinary part of the hospital birthing experience. And good medicine saves the lives of mothers and babies alike.

Two, I’m thinking of going to the Twin Cities in January to meet these new babies and reacquaint myself with Henry (and see some old friends).

I know: the Twin Cities in January?! But the flights have gotta be dirt cheap—most folks aren’t scrambling to travel to the below-zero—and I’m not teaching then, so why not? Plus, I want to see if I can still handle the forsaken cold.

Y’all know I dig New York (most of the time), but winters here are often merely dreary. I look forward to the bracing.

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Categories : Musing

Bless the beasts and the children

18 11 2014

Why one law for all?

Yes, I have and will continue to bang on about principle and theory, but sometimes concrete examples work best.

Such as dead children.

Jeez louise, you might be thinking, do you really have to get all extreme about this? I mean, aren’t you exaggerating just a wee?

Nope.

Despite the deaths of least 12 children from “faith healing” Christian families in their state, lawmakers and public officials in Idaho have refused to challenge a state law providing a religious exemption from manslaughter and murder charges, Vocativ reported.

There is little push to change the laws.

“This is about religious beliefs, the belief God is in charge of whether they live, and God is in charge of whether they die,” state Rep. Christy Perry (R) said. “This is about where they go for eternity.”

The move from doctor-centered to patient-centered decision-making has, on the whole, been good for patients, and one of the most important powers which has migrated to patients has been the right to refuse treatment.

I am foursquare in favor of such a right—for an adult, for herself, for any reason.

When making decisions on another’s behalf, however—especially a child whose care the state has charged one with providing—the exercise of such power ought to be scrutinized.

Or, to put it less abstractly, parents ought not be able to refuse life-saving care for their kids, especially when such care is routine and effective, because God said so.

Parental custody is conditional, not absolute.

This shouldn’t be a controversial statement: parents who starve or beat or neglect—including medically neglect—their children may be charged with crimes and have the kids taken away from them.

But throw a veneer of religiosity over such neglect, and well, whatcha gonna do?

Jackson Scott Porter, a newborn girl. . . lived for just 20 minutes before dying in her grandfather’s home. The girl’s mother did not receive any pre-natal care. Her cause of death was listed as untreated pneumonia.

“That’s the way we believe,” the grandfather, Mark Jerome, told KATU at the time. “We believe in God and the way God handles the situation, the way we do things.”

KATU also reported that local officials believe that another minor, 14-year-old Rockwell Sevy, had undiagnosed Down’s syndrome before he also died from pneumonia, in 2011.

Sevy’s father, Dan Sevy, refused to discuss his son’s death with KATU last year, citing his right to freedom of religion.

“I would like to say, I picture freedom as a full object. It’s not like you take ‘a’ freedom away,” Dan Sevy said. “It’s that you chip at the entire thing. Freedom is freedom. Whenever you try to restrict any one person, then you’re chipping away at freedom. Yours and mine.”

This is the dumbest goddamned argument about freedom this side of Galt’s Gulch, which dumbness would make it pathetic were it not pernicious—which is to say, had it not resulted in a boy’s death.

This religious exemption necessarily removes the children in these homes from protections of the law, specifically, of the equal protection clause of the 14th Amendment: in allowing parents to neglect their children for religious reasons, the children in these religious households are given fewer protections of the law than children in other households.

I had thought such exemptions were narrow (confined to vaccinations, say), but they are, dismayingly, widespread.

The right of the parent to inflict her religious beliefs on the child, even if it kills him, apparently matters more than the child himself.


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Categories : Musing, Rant

Testing, one, two

20 02 2012

Rick Santorum got one (kinda) right.

The bottom line is that a lot of prenatal tests are done to identify deformities in utero, and the customary procedure is to encourage abortions.

That is exactly why a lot of prenatal tests are done—to identify any possible problems—and, yes, if the problems are sufficiently grave, an abortion may follow.

I’d argue about the word “encourage”—doctors are unlikely to be so explicitly directive in their discussion of test results—but I wouldn’t doubt that a fair amount of pressure is brought to bear on the woman (and her partner) to decide quickly, not least because abortions become more complicated the later in the pregnancy they’re performed.

And in fact, prenatal testing, particularly amniocentesis — I’m not talking about general prenatal care—we’re talking about specifically prenatal testing, and specifically amniocentesis, which is a procedure that actually creates a risk of having a miscarriage when you have it, and is done for the purposes of identifying maladies in the womb. And which in many cases — in fact, most cases physicians recommend — particularly if there’s a problem — recommend abortion.

Again, this is less clear. “Non-directive counseling” is the watchword in genetics counseling, and while OB/GYN’s have not necessarily undergone such training, the mantra of let-the-patient-decide has pretty well seeped into the ethos of American medicine.

“Doctor’s orders” ain’t what they used to be: since the 1970s, patient autonomy has been elevated to one of the main principles of biomedical ethics, a principle reinforced by the legal system. Doctors may and do recommend a particular course of action, but having been imbued with the notion of respecting the ability of the patient to make her own decisions and mindful of the possibility of tort action if their recommended solution goes south, they are far more likely to dump information into the patient’s lap and say “your decision”.

Okay, that’s a bit severe, but it is the case that patients expect more information and that courts will hold a doctor liable if she withholds such information from them; failure to perform standard medical tests and inform the patient of the results can itself result in lawsuits.

This is the real dynamic behind the pressure—and oh, yes, there is pressure*—for pregnant women to undergo prenatal testing.  Blood tests and ultrasounds are routine in all pregnancies in the US, and amniocentesis is strongly recommended for high-risk pregnancies, a procedure which Santorum, correctly, notes puts the fetus at risk for miscarriage. To decline such tests is to open oneself to repeated (incredulous and/or hostile) questioning of that decision.

But here is where Santorum begins to go off track:

One of the things that you don’t know about ObamaCare in one of the mandates is they require free prenatal testing. Why? Because free prenatal testing ends up in more abortions and, therefore, less care that has to be done, because we cull the ranks of the disabled in our society. That too is part of ObamaCare — another hidden message as to what president Obama thinks of those who are less able than the elites who want to govern our country.

Let’s unpack this, shall we?

First, those who perform the test, those on whom the tests are performed, those who pay for the test,  and those who regulate insurance are not all the same person. The doctor orders the test because it is standard medical practice and because she agrees that this standard medical practice is, in fact good, insofar as it gives both her and her patient more information. The patient generally (although not always) wants this information, so she, too assents to the screenings.

Those who pay for the test do so as a result of pressure from doctors to pay for good medical care and because, yes, testing can lead to lower costs to the insurer down the road. These lower costs may result from treatments prior to birth to forestall greater problems after birth and, yes, from women deciding to terminate pregnancies which are at high risk of resulting in the birth of a child with a disability. Over 90 percent of fetuses which test positive for Trisomy 21, the chromosomal abnormality responsible for Down Syndrome, are terminated.

There was, in fact, a case in which an insurer told a couple that if they did not terminate an affected pregnancy, any medical expenses associated with the birth and the child would not be covered. The couple sued, and won. Given that many couples will chose voluntarily to end such pregnancies, however, such coercion is generally unnecessary.

Finally, there are the insurance regulators, who have to balance concerns of patients, doctors,  and insurance companies; given that there is little conflict between these different groups (although there may be with some individual patients and doctors) about the desirability of the tests themselves, encouraging or even mandating partial or full coverage of such tests is non-controversial.

This basic dynamic was set into play long before Barack Obama became president, and it is highly unlikely that the (equally highly unlikely) presidency of Rick Santorum would alter this in any way.

Oh, he might try to force insurers to drop coverage of prenatal care, but both Congress and the courts would be hostile (for a variety of reasons) to any such executive orders. The testing regime, for better and for worse, has become entrenched in American medicine.

Let us now consider the most offensive aspect of Santorum’s screed against screening: he doesn’t consider the role of the women (or couples) themselves. Once again, they are pure victims of a dark techno-liberal conspiracy, unable to make any decisions for themselves and unworthy of consideration as actors in their own lives. They must be protected from Obama, liberals, doctors, and, of course, themselves.

That is Santorum’s own not-so-hidden message to the rest of us: he doesn’t consider us able to make the most basic decisions about our own lives.

I hate the term “sheeple”, but it certainly seems as if that’s how Santorum, the would-be shepherd, views the American people.

~~~~~

*Questions regarding prenatal screening have long preoccupied those who work in bioethics; a good introduction to some of this work is Prenatal Testing and Disability Rights by Erik Parens and Adrienne Asch.


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Categories : Politics

And those magic wristbands don’t work, either

6 01 2011

Andrew Wakefield is a fraud—and the British Medical Journal has the evidence to prove it.

I tend to stay away from anti-vaxers, not because they don’t deserve the derision, but because there are many who are much better situated than me (see, for example, this post by Orac at Respectful Insolence) to take ’em on.

It’s not that there are no risks associated with vaccines or that no one has ever been adversely affected by vaccines—every year, for a quick example, there are people who are adversely affected by the flu vaccine who likely would have been fine without it—but one has to be clear what those risks are.

Stating that the measels, mumps, and rubella (MMR) vaccine causes autism is not clarifying those risks.

In fact, Wakefield was not only wrong when he made that connection in a 1998 Lancet article (an article which was retracted in 2010), he was deliberately wrong, that is, he fucked with the data. As the editors of BMJ note:

The Office of Research Integrity in the United States defines fraud as fabrication, falsification, or plagiarism. Deer unearthed clear evidence of falsification. He found that not one of the 12 cases reported in the 1998 Lancet paper was free of misrepresentation or undisclosed alteration, and that in no single case could the medical records be fully reconciled with the descriptions, diagnoses, or histories published in the journal.

Who perpetrated this fraud? There is no doubt that it was Wakefield. Is it possible that he was wrong, but not dishonest: that he was so incompetent that he was unable to fairly describe the project, or to report even one of the 12 children’s cases accurately? No. A great deal of thought and effort must have gone into drafting the paper to achieve the results he wanted: the discrepancies all led in one direction; misreporting was gross. Moreover, although the scale of the GMC’s 217 day hearing precluded additional charges focused directly on the fraud, the panel found him guilty of dishonesty concerning the study’s admissions criteria, its funding by the Legal Aid Board, and his statements about it afterwards.

Furthermore, Wakefield has been given ample opportunity either to replicate the paper’s findings, or to say he was mistaken. He has declined to do either. He refused to join 10 of his coauthors in retracting the paper’s interpretation in 2004, and has repeatedly denied doing anything wrong at all. Instead, although now disgraced and stripped of his clinical and academic credentials, he continues to push his views. [emphasis added]

Again, I leave it to the medical and scientific folk to tear into Wakefield’s manipulations; I want to address the public health implications of his fraud.

BMJ’s editors note that it is difficult to trace declining vaccination rates in the UK and elsewhere directly to Wakefield’s work, but it is clear that rates had fallen after 1998, and are still below the World Health Organization’s recommended coverage of 95 percent of a population. In 2008, measles were “declared endemic in England and Wales”, and an outbreak of mumps in Essen, Germany revealed that of the 71 children affected, 68 hadn’t been vaccinated. Finally, according to a June 2009 Pediatrics article (as discussed in the Wired article linked to, above), pertussis rates jumped from 1000 in 1976 to 26,000 in 2004.

So what? So some kids get sick for awhile. Sucks for them, but that’s what they get for having anti-vax parents.

Except that it’s not fair for those kids, and it puts others at risk of morbidity and mortality. Measles can kill. Meningitis can kill. Pertussis can kill, and on and on. Furthermore, many of the diseases which can be prevented by vaccines depend on herd immunity—they work mainly by preventing a disease from settling into a reservoir in a population—which means that if enough people in any given group are unvaccinated, the disease can spread.

Again, what’s the problem? If folks don’t get themselves immunized, that’s on them.

But it’s not. There are some people—infants, transplant patients, people with compromised immune systems, those  who may be  allergic to (as I am to the egg in flu vaccines) or otherwise intolerant to ingredients in the vaccine, among others—who are vulnerable to outbreaks. And even those who have been vaccinated may be at risk if, say, an especially virulent form of a disease is allowed to spread.

So back to the beginning(ish): There are risks to vaccination, but so there are greater risks to not vaccinating, not only to yourself or your kid, but to everyone around you.

Some parents feel quite comfortable withholding vaccines from their kids, but the only reason they can safely do so is because every other parent is vaccinating her kids. And hey, guess what, if everyone else has to take the risk to keep the disease at bay, then so should the anti-vaxers. Unless they are willing to keep themselves and their kids away from everyone else for as long as they all remain unvaccinated, they are free-riding on the rest of us. They are, in a sense, ripping us off.

If you want the benefits, you have to bear the burdens.

Finally, it is worth noting, along with the editors of BMJ,that

[P]erhaps as important as the scare’s effect on infectious disease is the energy, emotion, and money that have been diverted away from efforts to understand the real causes of autism and how to help children and families who live with it.

Wakefield and Age of Autism and Generation Rescue are doing no favors for those who do have autism or their families. Jennifer McCarthy and JB Handley, parents of kids with autism, may sincerely believe their bullshit, but the sincerity of those beliefs does not make that bs any less malodorous.

Who knows, maybe there is a specific cause for autism, one which, if rooted out, could lead to the end of this syndrome.

But that cause ain’t the MMR vaccine.


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Categories : Rant

Comment on a ‘no comment’

22 12 2010

Remember that nun in Arizona who was excommunicated for sanctioning life-saving surgery for a pregnant woman, surgery which resulted in the termination of her 11-week pregnancy?

Well, now the entire hospital has been disciplined, losing its official Catholic affiliation.

Bishop Thomas Olmsted called the 2009 procedure an abortion and said St. Joseph’s Hospital and Medical Center – recognized internationally for its neurology and neurosurgery practices – violated ethical and religious directives of the national Conference of Catholic Bishops.

“In the decision to abort, the equal dignity of mother and her baby were not both upheld,” Olmsted said at a news conference announcing the decision. “The mother had a disease that needed to be treated. But instead of treating the disease, St. Joseph’s medical staff and ethics committee decided that the healthy, 11-week-old baby should be directly killed.”

St. Joseph’s president Linda Hunt took the outrageous position that

“If we are presented with a situation in which a pregnancy threatens a woman’s life, our first priority is to save both patients. If that is not possible, we will always save the life we can save, and that is what we did in this case,” Hunt said. “Morally, ethically, and legally, we simply cannot stand by and let someone die whose life we might be able to save.”

It was precisely this attitude, as well as the unwillingness of administrators and doctors to promise never ever ever again attempt to save a pregnant woman’s life when that procedure might end the life of the fetus that led the diocese to strip its affiliation from St. Joseph’s.

Now that’s life.

h/t: Huffington Post


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Categories : Follow-up

Jane says

4 10 2009

Do you know Jane?

‘Jane’ was the name of the underground abortion service in Chicago in the late sixties and early seventies; it wound down after the Roe decision in 1973.

As told by Laura Kaplan (who was a part of Jane) in The Story of Jane, a number of women in the Chicago area put together a not-for-profit and completely illegal service, one which they eventually expanded to include pap smears and female health education. Although a few members were eventually busted (somewhat by mistake), they operated for years with the knowledge both of police and various ‘legit’ medical professionals.

That such an underground service existed is not a surprise. What is stunning, however, is how completely fucking radical these women were. They initially relied upon various sympathetic and/or mercenary doctors to perform the abortions, but eventually learned how to do them themselves.

You got that? These women received training from a guy who received training from a doctor—and went ahead and performed not only D&Cs, but also vacuum aspiration, and, eventually, second-trimester abortions.

I’m as pro-choice as they come, but even I blanched when I read that. Fucking hell, I thought, second-trimester abortions done in apartments and hotel rooms?!

But they were good. One woman did die—a death which led some members to drop out, and to a great deal of turmoil for those who remained—but her death was almost certainly the result of an infection caused by  abortion attempts performed elsewhere. Upon realizing the extent of her infection, Jane members told her to go immediately go to the hospital; she waited more than a day, then died at the hospital.

Kaplan describes the meeting following the woman’s death:

As details of the story were recounted, a numbness spread throughout the room. They had founded the service to save women from dying and now the very thing they were trying to prevent had happened.

That was the whole point of Jane, to save women; even more, to give them a way to save themselves.

It wasn’t simply about making safe, inexpensive abortions available to women, it was also about women—both Jane members and those who used their service—taking responsibility for their own lives. Jane set up training for their members, and provided counseling for the women who came to them. They didn’t have moral qualms about abortion itself, but they were careful to ask anyone who seemed uncertain if she really wanted to go through with it. The decision, and the responsibility, lay with the woman herself.

Kaplan is not a deft storyteller, but she is an honest one. She details the egos and tensions, the difficulties of involvement with an underground organization, the conflicts with other women’s liberation organizations, and all the varieties of risk taken by Jane and the women they helped. All of these women shared desperation: the women (‘participants’, not patients) who came to Jane for help, and the members of Jane themselves, to help all who asked for it.

It was, in fact, that desperation to save women from unsafe abortions that led Jane to take over the operation itself, and to end up inducing 2nd-trimester miscarriages. If we don’t do it, they worried, what will happen to all these women?

There’s so much more to The Story of Jane. I used it in my ‘Women and Politics’ course I taught this past summer as a way not only to foreground reproductive issues, but also the issue of underground, anarchist, or DIY politics. Does underground work affect politics above the ground, or does DIY simply let the above-grounders off the hook? Or is the effect on ‘normal’ politics less the issue than the creation of one’s own politics?

I’m still chewing over those larger political issues. But when it comes to abortion, I wonder if Jane didn’t have the right idea. I’m a big fan of Planned Parenthood (see my links list), but they are at the forefront of putting abortion and contraception firmly within the medical sphere, i.e., within the sphere of specialization and  licensure and, most importantly, women-as-patients.

Jane insisted that abortion was something that women participated in, not that it was something done on or to them. This is your body, they repeated over and over and over, this is your life. In this context, the notion that women should have some idea of their own genitalia—a kind of mirror-empowerment which, honestly, always kind of put me off—seems less woo than utterly practical. How can you take care of yourself if you don’t know what you look like?

I know, there are both hospital-based and free-standing women’s clinics, not a few of which are also interested in patient or client education. And, frankly, autoclaves and medical education seem to me very good things.

But what about responsibility and liberation and solidarity? What of a woman’s (or any) emancipatory movement premised upon the simple declaration that you can and must free yourself? Jane was not encouraging women to bust out into chaos, but to recognize themselves as full human beings, and to inculcate a sense of responsibility not only to themselves but to those around around them.

With liberty and justice for all. Pretty fucking radical, huh?


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Categories : Musing, Review