As I wait with a bit of trepidation for my latest appearance as a talking head on a program about conjoined twins (this time with ABC’s 20/20), I find myself weary of trying to get some people to understand what I’m saying about separation surgeries.
I like to think I’m clear. You know what? I’m sure I am. Because people frequently remark upon how clear I am—and not just the SUV drivers at whom I am screaming to get off their cell phones and drive.
Yet over and over again people think I’m saying I’m opposed to all separations of conjoined twins. I’m not. If you don’t believe me, buy my book. And read it, too.
What I’m saying is that not all separations of conjoined children make sense. Sometimes the costs to the children are so great, and the evidence of medical need so small, that the children should be left together and given whatever medical help they need—including physical therapy and psychological care, if necessary—to do as well as they can.
I remember a few months back I was talking to a reporter working on a separation story. I talked to her for an hour. I told her what I really wanted her to understand were these two things: First, separation doesn’t just come with risks, it comes with costs. In other words, even if everything goes right, sometimes the twins are going to be left with substantial disabilities that are necessarily created by the separation surgery. Second, the media tends to report surgeries as successes even when outcomes leave children much worse off than they started from a medical point of view. In this way, the media participates in the mythology of separation surgeries. I basically said “Stop talking about risks and talk about COSTS. And stop talking about successes when the real outcomes are often not successes.”
When the story came out on the A.P. wire, what was the headline? Separation Surgery Has Risks, Success Stories. Grooooannn.
I don’t mean to suggest that all or even most of my media experiences have been this frustrating. But man, it can be really hard to get reporters and especially their editors to understand how they contribute to the very problems I’m trying to tell them about. Their stories contribute to the falsehood that separations are always necessary and necessarily good.
What kind of separation surgery do I think would be universally good? The kind that separated involved adults from their conflicted interests. Find a way to stop surgeons and hospitals from benefiting so richly even when their patients die from elective, scientifically-questionable separation surgery. Find a way to stop the media from perpetuating the mythologies that lead to more of the separations they just love to report. Yeah, now that would represent a serious advance in healthcare.
Want to read the real story of what happens to the “miracle” babies flown to the U.S. for media-circus separations? Read this.