They mean well (Part 1)

I have to repeat that as a mantra, to stop from going utterly berserk with inchoate rage - my instinctive reaction to the maltreatment of disadvantaged children.

Every normal man must be tempted, at times, to spit on his hands, hoist the black flag, and begin slitting throats. - Henry Louis Mencken (1880 - 1956)

Well, I'm not normal, and not a man - but I understand the sentiment exactly.

From the Stanford Medicine Magazine, a story on the surgical assignment of sex to helpless children.Gender X - 2011 SPRING - Stanford Medicine Magazine - Stanford University School of Medicine

Deciding how, or even if, DSDs (Disorders of Sexual Development) should be treated is trying the skills, minds and hearts of all concerned. A jagged divide has opened between those who believe in surgery to “fix” a baby’s sex and those who say — barring medical necessity — a child’s genitals should be kept intact. The arguments touch on the complex nature of gender and sexual identity, on what makes up a person’s sense of self, and who — or what — decides what that might be. The issues are roiling the community of pediatric bioethicists to such an extent that today many of its members are hesitant to publicly express their opinions for fear of hardening the divide. “Everybody’s got a dog in this fight,” says one.

Fair comment.

I wonder if those who advocate surgery would volunteer for an experiment? A thought experiment, as to actually carry it out would be not just unethical, but actually evil, no matter what our intent.

Let's imagine castrating them all, and see how they manage to cope. We'll be humane about it, give them full sex reassignment surgery, not the butchery that was practiced in the past.

Somehow I don't think they'd be enthused; because different standards apply to them. They're different. Normal. Not Intersexed.

Even given a marked improvement in today’s surgical techniques and an increase in psychosexual awareness, surgeon Linda Dairiki Shortliffe, MD, professor of urology at the Stanford School of Medicine, says,

“There is no right answer in many of these cases. That’s why it’s so hard to give advice to parents. We really don’t know what that person is going to be when they grow up.”

True. Now OK, I'm a Rocket Scientist. But it doesn't take one to realise that if you don't know what sex they're going to be in the future, arbitrarily surgically assigning them one that could well be inappropriate is not the best of ideas. They can't claim ignorance of the consequences now, not when so many of their patients are telling them they were wrong.

Katrina Karkazis, PhD, senior research scholar at Stanford’s Center for Biomedical Ethics, who authored the 2008 book Fixing Sex: Intersex, Medical Authority and Lived Experience, says narrow ideas about gender, societal and medical discomfort with such ambiguity, and distraught parents’ belief that they must surgically make their child normal as soon as possible have led to avoidable mistakes. “If we slow things down and think about it more,” Karkazis says, “better decisions would be made.”

It's not a medical issue, it's a social one. And often a religious one.

This is not something polite company talks about, nor even within the scientific community is it studied much. Often owing as much to the stigma as to the relative rarity of occurrences, there are no hard numbers on which research might be based, as yet no national surveys or database. Longitudinal medical studies that gauge how adolescents or adults have fared after genital plastic surgery as infants are sparse.
...
Says one prominent pediatric urologist who does frequent genital surgeries on infants, “I see all these photos in the Wall Street Journal, kids with holes in their faces; they’re pleading for money to fix cleft palates. Well, I can’t show these penises, which look absolutely terrible. People would say it’s child pornography.”

It’s the secrecy, the whiff of tawdriness, that still sets medical and social treatment of DSDs apart.

As I said in a Cosmos Science Magazine article back in 2007,

It is confusing. And it’s upsetting, and it’s embarrassing and it’s not suitable for children and it’s not safe for work — so people don’t want to talk about it.

So it doesn't get studied - not by reputable, well-brought-up, God-Fearing people.

I must be careful I'm not hypocritical here. I'm a very conservative, prim, and private person. I'm uncomfortable talking about sex and genitalia too. But what the Blue Green and Yellow Striped Blazes does my discomfort signify in the Grand Scheme of things when children are being mutilated to make people like me comfortable in the delusion that sex is a strict binary? Oh, I know how the parents feel. I felt it myself, when my boy was born with an Intersex condition, that required him to have genital reconstruction before I did. More by good luck than good judgement - and as the result of a pediatric urologist who knew what he was doing - we opted for a minimal reconstruction that preserved functionality, as well as relieving the increasing pain and difficulty with urination our baby boy suffered.

It was a long wait, trying to comfort him in his pain, while he grew strong enough to endure the surgery. Sometimes it's necessary, and you have to take your best shot, not limiting options. I'm no Fanatic, against surgery under all circumstances. Just against it when it's not actually needed for the child's benefit, not that of Society, or The Parents, or to make the medics feel more comfortable.

Pediatric endocrinologist Avni Shah, MD, a clinical instructor in pediatrics, offers that she was pleasantly surprised to learn that pediatric and adolescent gynecologist Paula Hillard, MD, a professor of obstetrics and gynecology, seated beside her, had been summoned to consult on two intersex babies within the past two months. But, as those around the table agreed, that was a matter of chance: A pediatric urologist who routinely performs plastic surgery in these cases — genitoplasty — might just as easily have been called.

It's luck, you see. Get a good team, and the child remains intact. Get a not so good one, and it's Dr Mengele all over again. Intersexed people just aren't a priority, except to make the problem of our existence go away, or be rendered invisible.

“The evidence seems overwhelming that normal humans are not psychosexually neutral at birth,” Diamond wrote.

But what of children born with ambiguous genitalia? Are they, according to the Freudian notion still prevalent today, dependent upon a penis or a lack thereof to define their gender identity? How often is this view imposed on infants through genital surgery? What’s right, and whose call is it to make?

A leading researcher on DSDs, William Reiner, MD, a pediatric urologist and psychiatrist at the University of Oklahoma, says the answers still largely depend on where a child is born. Outside of a handful of teaching hospitals, UC-San Francisco, the University of Michigan and the University of Pittsburgh among them, few U.S. institutions have any established protocol for the always surprising, and often shocking, event of an intersex birth.

“There is no standard of care,” says Reiner, also on staff at Johns Hopkins. “Usually the approach is determined by who you happen to see first. In the Western world, everybody expects to have a perfect child to begin with. So if they aren’t perfect, they’re all upset. Most of what has evolved [in the treatment of DSDs] over the last half of the 20th century has more to do with people’s ideas and views and thoughts and biases than it has to do with any kind of data.”

With consequences that have been unspeakable in many cases. Fatal all too often too, after an existence that's hellish for the mutilated child.

I should emphasise that that didn't happen to me. Well, not as a child, though at age 20, surgery to remove my gallbladder removed rather more than that. As is common in such cases, the records get mislaid. In my case, not deliberately, they lost a lot during a renovation of that part of the hospital. That's unusual, usually it's quite deliberate, "to protect the patient" from "knowledge they were not meant to know".

I would have consented anyway. Nothing inside worked, I didn't consider transition at the time. Better to be a woman who looked like a normal man. It was only seven years later that I found that I didn't look like a normal man "down there". I don't consider myself hard done by, just wish they would have asked me. But I digress.

It's the luck of the draw, the majority of medics involved make it up as they go along because they're supremely ignorant, and the last people they'd consider consulting are patient advocacy groups - those who know the situation intimately.

As such, the state Department of Social Services called what amounted to an emergency hearing to determine what to do about this odd and fascinating case. An endocrinologist testified that the child wouldn’t be adoptable without an easily identifiable sex and advocated surgery, says Lisette’s adopted mother. A pediatric urologist, also favoring surgery — and soon — said the child’s gender could go either way.

Think about it: neither medic advocated surgery because it was medically necessary. One advocated it to make it more convenient for adoption, the other advocated it despite the child's gender being indeterminate. No-one spoke about the child's right to self-determination when competent.

For reasons that the girl’s adopted mother says are still not clear, a family court judge ordered that Lisette be surgically transformed into a girl, usually the easier surgical option. So when the child was 16 months old, her phallus was shaped into a clitoris and her testicular tissue removed. Today she is left with half an ovary and a uterus, and surgically created labia. She will likely be infertile.

“I wasn’t privy to the hearing,” says her adopted mother. “Her case worker told me after the fact. I was devastated. And so we got her at 20 months. We took her to a developmental pediatrician. We thought she might be mentally retarded; she wasn’t walking, not talking. Now she’s normalized out of that. But I always thought she should have been a boy. Her testosterone level is so high.”

I hope she's wrong; I fear she's right. And this story is repeated, with variations, again and again and again.

“She is the coolest kid,” says her mother. “I don’t want her to be angry. I want to be careful not to make her angry that they did this surgery. My gut says that it was really stupid, and it makes me angry. But I don’t want to bias her that way.

“But she’s asked me, ‘Will I be a man when I grow up? And I say, ‘Yeah, you might be.’”

Now pardon me, the screen has gone all blurry. Must be the 'mones, right? Oh wait, I still haven't taken today's dose, no estrogen spike to blame.

Since testifying before a hearing investigating “the medical ‘normalization’ of intersex people” convened by the San Francisco Human Rights Commission in 2004, Laurence Baskin, MD, chief of pediatric urology at UCSF, rarely speaks publicly about the complex decision to surgically assign a gender to an intersex child.

“I thought they were going to shoot me,” he says of his experience at the hearing.

But Baskin, like many other surgeons and medical clinicians who treat these children, is acutely aware of how much remains unknown about the long-term ramifications of assigning gender in infancy. In a recent review article in Pediatric Urology, he and his co-authors called for further study to assess sexual function and psychosexual development in people on whom genital surgery was involuntarily performed.

Baskin says he empathizes with adults now suffering from bad surgical outcomes, and wishes they had had the same level of care available today. “And in 10 or 20 years, it will be better,” he says, moments after performing an infant genitoplasty himself.

This must be some strange new meaning of the word "empathise" I wasn't aware of.

If more study is needed - and it is, I agree with him - then what the heck is he doing surgery for now? I just have to hope it's a minor repair, or a radical reconstruction where the infant has 46XY cloacal extrophy, and thus a 2999/3000 (we think) chance of being male, rather than the usual 2 in 3 crapshoot - no better than a coin-toss, as some are bi-gendered and can adapt as either sex to some degree.

Pediatric urologist Hsi-Yang Wu, associate professor of urology at Stanford, notes that an established surgical technique that pulls the clitoris under the pubic bone — now known to cause painful orgasms — is no longer used.

We just be thankful for small mercies, right? That these Quacks no longer condemn these children to a lifetime of pain due to their medical incompetence, they just butcher them.

While he called the surgery “not particularly difficult,” like his colleagues, Wu was quick to add that the long-term outcome remains unknown. “But I have a concern about waiting, too, about letting the child make the decision, as if that would be easier. I’m not sure it is. What I tell parents is, ‘You have to make decisions for your kids on everything, all the time.’”

True, when the surgery is necessary. But not because someone who knows nothing if the experience of being Intersexed "has concerns" because... well, just because. Because they're uncomfortable.

Physicians argue that torn between cultural norms and expectations, the complexity of gender identity, and a dearth of hard research data, they strive to offer the best medical advice they can.

Let's look at that:

1. Cultural Norms and Expectations
2. Complexity of Gender Identity
3. Dearth of Hard Research Data

Why should "cultural norms and expectations" play any role whatsoever, in what is supposed to be a medical issue, not an ideological, political, social or religious one?

"Complexity of Gender Identity" - very true, we don't know enough, though the data that we do have shows that Gender Identity is set pre-natally, and isn't subject to change thereafter except possibly in very borderline cases (and probably not even then).

"Dearth of Hard Research Data" - meaning they don't know what they're doing, and know they don't know what they're doing now. They can no longer use ignorance as an excuse.

The "best medical advice" it would seem to me, is to wait until the child can tell us what gender they are. Simple, really. Obvious. But that goes against their feelings of discomfort, so they are "torn".

Not literally though... the thought of rending them limb from limb, while it has a certain appeal, would be uncivilised. Not I think unjust though.

Some groups demand an end to all cosmetic genitoplasty on children with DSDs at least until the child is old enough to give consent; others warn that alienating physicians will not help their cause. Adding to the chill is a nascent effort to hold physicians and hospitals legally accountable for genital surgery that, years later, has left their former patients unable to sexually perform or even experience sexual sensation.

Bingo. They're afraid. They're scared that if their well-meaning malpractice should be exposed to the courts, they will be held accountable for it. So they must hide the evidence, at least until the statute of limitations runs out.

I myself would be willing to grant a blanket amnesty for any harm done with genuine good intent. As long as they were not provably negligent, and not acting illegally (as some have), then providing they cease immediately, they should not be held accountable for past mistakes. Past wrongs, yes, but not careless errors only obvious in hindsight. But then again, I'm not one of their butchered victims, and my concern is for the future, not the past. For the same reason, the manufacturers of the drug DES should not be held liable - as long as they immediately admit the problems, and start funding some research into the issue. I'm after restitution and repentance, not punishment.

At the meeting, bioethicist Karkazis spoke of making better decisions about genital surgery; about full disclosure; about helping families who have been misinformed or lied to; about humanizing medical, social and psychological treatment during high-stress times.

Think about it: a culture where it was the norm to lie, the norm to misinform, the norm to be inhuman, just to prevent psychological discomfort to the medics, to the parents, and to society in general. Not to the helpless infant they're about to castrate.

Can you imagine the scandal if this behaviour, behaviour now acknowledged by the medical profession as being widespread if not universal, was applied to any non-Intersexed person? The rules for us are different, even now, even when they're trying to set their own house in order.

There was the matter of his ambiguous genitalia, which on that basis alone had relegated him to the category of “special needs,” and then there was the fact he would be their fifth child.

But the Stevensons — she’s a stay-at-home mom and he works in the software industry — also live in a small town in the Pacific Northwest. And the message from the pulpit of the close-knit church in which they worship is anything but ambiguous when it comes to matters of sex. Meredith describes it as conservative and unyielding: Man marries woman and, God willing, children result.

“So this was one other thing that entered the picture,” Meredith says. “My husband and I had to think long and hard about our feelings toward homosexuality. Say we raised him as a boy and he falls in love with a boy. It could mean we picked the wrong gender. Or it could mean he’s homosexual. We had to make sure we were fine with homosexuality because we didn’t know for sure where he fell on the gender spectrum.”

Or she. Despite what your church might say. The Earth isn't flat, and "the things that your Preacher is liable to teach ya, they ain't necessarily so".

He might be straight. She might be lesbian. He might be gay. She might be straight. Either could be bisexual, or most likely, asexual. It's not about sexual orientation, it's about gender identity, who you are. Trust me on that one, OK? I know whereof I speak.

Against the advice of a pediatric urologist who urged at least the application of topical testosterone on what he called the smallest penis he’d ever seen, the couple have decided to simply let their child grow into who he is, without surgery or other treatment, without adopting fears over the stigma of a male unable to urinate standing up.

When, during a family vacation, the child begged his parents to buy him a dress, they did — and allowed him to wear it throughout a flea market despite stares from passersby.

“I felt it then,” Meredith says. “That was the only point that it felt a little weird.

That's OK. Heck, I would too. But somehow, I think this child is going to be alright. They negotiated the gauntlet, avoided sexual mutilation, and have parents whose prime concern is not their own discomfort or embarrassment, it's the love they feel for their child.

They'll probably be thrown out of their Church for that of course. That's usual in such cases.

Next Post: Is Sexual Identity All in Your Head? - ABC News

Spoiler: Yes, it is.

For those coming from Grand Rounds - Part II is the next post. Feel free to have a look around.