E-Mail This Article to a Friend The bone machine (continued)

DROR PALEY and I finally had a chance to sit down around 10 o’clock at night, at a Middle Eastern restaurant in a strip mall near his home in the Baltimore suburbs. He was candid, persuasive, eloquent. An immigrant from Israel by way of Canada, he bantered with the waiter over how "hummus" is pronounced in Hebrew and Arabic. And he impressed upon me that he is absolutely sure that he is doing the right thing.

Paley studied limb-lengthening in Italy and Russia in 1986, beginning his work at the University of Maryland the following year. Dr. John Herzenberg became his surgical partner in 1991, and they ran the Maryland Center for Limb Lengthening at the university until 2001, when Sinai made them the proverbial offer they couldn’t refuse. They may well be the most experienced limb-lengthening surgeons in the country.

The politics of limb-lengthening within Little People of America is fraught with emotion. But it is safe to say that Paley is unpopular in LPA circles — not just because he does limb-lengthening, but because he’s perceived as arrogant, a showman, a salesman. Some years ago, the organization decided to recommend that those seeking the surgery have it done at Cedar-Sinai Medical Center, in Los Angeles, which was following an experimental protocol and which mandated psychological counseling for all its prospective limb-lengthening patients. Paley expressed disdain, telling me that his method is better than the one used at Cedar-Sinai, and that he’d long ago stopped offering counseling for dwarfs. "I decided that doing psychological evaluations of teenagers had no value whatsoever," he said, laughing slightly.

But he grew more serious when he talked about what he sees as LPA’s unwillingness to let him meet with members and discuss his work. If nothing else, he said, LPA should be willing to help members find limb-lengthening surgeons with a good track record. "There were at least 10 patients in clinic today who had been screwed up by other doctors," he said. "They just don’t know what they’re doing."

We discussed one case — briefly celebrated by the media in the 1980s — involving a young patient who had been turned away by Paley because he was simply too short and who later ran into trouble with another surgeon. "They end up getting half-assed treatments, bad treatments. That gives what I do a bad name. I don’t have a single patient like that," Paley said. (I later learned that the boy, now a young adult, was involved in a $1.85 million legal case against his surgeon. I wrote to him, seeking an interview, and received a call from someone identifying himself as his brother, who told me that he was not allowed to discuss the case. The law firm that represented him did not respond to my inquiry, either.)

Yet Paley’s track record is not perfect, as he himself willingly revealed. In just the past few years, he and Herzenberg have learned that dwarfs with a certain type of spinal deformity are vulnerable to spinal-cord injury when undergoing some of the procedures involved in limb-lengthening. The most extreme case involved a young woman who eventually was sent to Dr. Michael Ain, an orthopedic surgeon at nearby Johns Hopkins Hospital, who is himself an achondroplastic dwarf. Ain — a staunch critic of limb-lengthening surgery who nevertheless respects Paley’s and Herzenberg’s surgical skills — performed decompression surgery on the woman’s spine. She is now partially paralyzed and walks with a cane. "To me, she’s a terrible result," Paley said. "I actually don’t know how she rates herself. But to me, she would have been better off if she had never had the lengthening."

So why do it? Why put dwarfs through major surgery when there’s a strong case to be made that there’s nothing wrong with them in the first place? Why should insurance companies lay out as much as $230,000 to pay for a full course of treatment?

"Our society is designed for easier accessibility around the height of about five feet tall, maybe even taller than that. If you’re five feet tall, the height of the chair, the distance to the gas pedal in a car, the coat hanger right there — I mean, that coat hanger right there is almost inaccessible to most dwarfs," Paley replied, pointing to one behind my chair. "But who designed it to be that way? If we were all three feet tall, it wouldn’t be that high, would it? The position of that handle on the door is not designed for a dwarf. It will hit him in the forehead. So he has to reach up here to hold that handle. The door knob, the light switches — it’s a fact of life.

"Okay, fine. You can live as a short-statured person, but you are more challenged. And if you could safely make someone fit into the more normal height range, their life would be easier. And I think if somebody has the resources to do that — insurance, or personal funds, because it’s not emergency surgery — and is willing to go through the pain and suffering and inconvenience and everything else to go through it, and you’ve got a caretaker who can provide it in a reasonable fashion where the risks are acceptable, then it’s a reasonable thing to do. And that’s my philosophy on it."

AFTER I TURNED my tape recorder off, as we were walking outside to our cars, Paley said something else. I wasn’t taking notes, but it went pretty much like this: Now that you’ve seen limb-lengthening up close, now that you know it can work and improve people’s lives, don’t you have an obligation to tell your daughter about it? Shouldn’t she at least know that such a procedure exists? Maybe some day she’ll want it for herself.

I made a small joke about his trying to lay some guilt on me, but I did think about it. It struck me as contradictory coming from someone who, just 12 hours earlier, had told me that psychological evaluations of dwarf teenagers were worthless, that of course it’s the parents who must take the lead in making the decision. Not that Paley would advocate limb-lengthening against a child’s will — after all, given the pain and commitment and months of physical therapy involved, the results would be disastrous unless the patient were thoroughly on board. But if a parent can push a child into having limb-lengthening surgery, why can’t he do the opposite as well: simply keep knowledge of the procedure to himself, to withhold that option?

Still, Paley had a point. Much as Barbara and I oppose limb-lengthening for Becky, if she somehow learned about it and insisted on having it done, we’re not sure what we’d do. If we couldn’t talk her out of it, and if her overall health made her a good candidate, I doubt that we’d refuse.

Just before writing this, I showed Becky a videotape of a 12-and-a-half-minute feature story that CBS News had broadcast on a recent Sunday morning. It included Paley and Ain making the case for and against limb-lengthening; the dwarf actor Danny Woodburn, who was adamantly opposed to the surgery; and several of Paley’s young patients, who were shown both walking around and lying in the operating room, getting huge steel screws inserted into their legs.

I didn’t say much. I told Becky that I had met both Dr. Paley and Dr. Ain, and that Ain had once examined her in a hotel room at an LPA meeting. Her response: That looks like pain. Getting tubes put in my ears and getting shots is bad enough. I assured her that she was fine just the way she was, that we would never push her to have such surgery, and that, in fact, we hoped she wouldn’t want it.

And we do hope she won’t want it. But the truth is that I have no idea of what seed I might have planted in Becky’s mind by showing her that videotape. Within days, she was telling me that she wanted to show it to her class. (Her teacher talked her out of it.)

So far, being a dwarf hasn’t been much of an impediment for Becky. She’s too young to drive, she’s too young to date, and if she really, really needs to reach something, she can just ask Mom or Dad to grab it for her. In a few years, though, she no doubt will have developed a full-blown critique of dwarfism, and it’s not likely to be a favorable one.

We wouldn’t have chosen dwarfism for her. If there was a magic pill that would "cure" her of achondroplasia, we’d give it to her. But there isn’t a magic pill. Limb-lengthening is an imperfect solution to a problem that is more the culture’s than hers.

Besides, there is value to Becky’s dwarfism — as there is to diversity, to individuality, to identity. Breaking her bones and stretching them out would call that identity into question. She would be a tall dwarf, genetically programmed to have children who are dwarfs. She would still be destined to have the same back and joint and respiratory problems that she would have had if she had only grown to be four feet tall. But now those problems would be complicated by the uncertain long-term health of surgically lengthened bones. She would be stuck between two worlds, no longer quite accepted by the dwarf community but not really part of the average-size majority, either.

As F. Scott Fitzgerald once wrote, "The test of a first-rate intelligence is the ability to hold two opposed ideas in the mind at the same time, and still retain the ability to function." Here are the two contradictory thoughts that I struggle with: Becky’s genome is imperfect, and thus her life will be imperfect in ways different from — but not worse than — those of her average-size peers. And Becky is perfect just the way she is.

It’s a message that she not only needs to hear, but to understand and absorb as well.

Adapted from Little People: Learning To See the World Through My Daughter’s Eyes, by Dan Kennedy (Rodale, 296 pages, $24.95). Printed with the permission of the publisher. Copyright © 2003 by Dan Kennedy. All rights reserved. For more information, go to www.dankennedy.net/littlepeople.html