B A L T I M O R E, July 12, 2003 -- Renowned Johns Hopkins neurosurgeon Dr. Ben Carson was one of the lead doctors who this week sought to separate conjoined twins Laleh and Ladan Bijani.
Survival odds were stacked against them. Should doctors still have attempted to grant the Iranian twins their wish?
Dr. Carson discussed medicine and morals with Nightline's Chris Bury. Excerpts of the interview appear below:
CHRIS BURY: You've performed at least three successful surgeries on conjoined twins, but these were all done with infants, with children. What made this particular operation [this week] different, and perhaps more difficult?
DR. BEN CARSON: The big difference here is that these young ladies had been fused for 29 years, so their brains were extraordinarily adherent to each other. So we didn't have the advantage of being able to establish planes and to pull them apart.
Number two, the bones were incredibly thick, particularly along the base, like a brick. And number three, they're large individuals. With the babies, we can work on the front, flip them over, work on the back. This was not going to be a possibility with individuals of a combined of 100 kilograms or more. So those were things that precluded us from being able to do things in the normal fashion. …
BURY: Did they meet the definition of informed consent? … I read that one of the surgeons on the team actually argued to them that they shouldn't undergo this operation.
CARSON: More than one. They made a very strong bid to dissuade them from having surgery, but again, they continued to reiterate that their lives, as they existed, were worse than death.
BURY: Was this, though, at the end of the day, elective surgery? I mean, after all, they had been living as conjoined twins for 28 years. They could have gone on living for some number of years beyond.
CARSON: They probably would have lived on for several more years. As you probably know, conjoined twins frequently die considerably earlier than the general population, simply because complications that might not normally affect someone have profound effects on them. …
Again, you're looking at a situation where you would probably have to walk a mile in their shoes to understand their psyche. Because most of us would say, "It can't be that bad to be joined to somebody," but I wonder how many of us would say that if every decision that we ever made in life had to be by committee — when to turn, when to eat, when to go to the bathroom. Particularly if you're a highly intelligent person who's ambitious. I suspect that, in fact, many people might have a much better understanding of their situation if they could just spend a week like that. …
Progress In Practice
BURY: When it became clear that the operation was not a success, you certainly knew there were going to be recriminations and second-guessing.
CARSON: Yes, of course, which is always the case, throughout history. If you look at almost any type of very complex surgery that is done for the first time, in many cases the results are not good — the difference being that those cases are not usually done under the microscope of the entire international community, and therefore, the same kinds of questions are not necessarily asked.
But you have to recognize that historically, we're able to make progress as scientists, in addition to as humanitarians, because we learn from situations that occur. … They didn't all go smoothly in the beginning. Should we have just abandoned it? Of course not. Were there people who said it couldn't be done? Of course there were. When we attempted to go into outer space, there were people who said, "Of course you can't do that." … If everybody always listened to the nay-sayers, where would they be? If I listened to the people who told me I couldn't go to medical school, who told me I couldn't become a neurosurgeon, where would I be? You can't do that.
BURY: In this case, these were women who suffered from a relatively rare condition — conjoined twins. It's not as if you were developing, for example, a heart pump, where your operation would affect millions and millions.
CARSON: Correct. But bear in mind you're also talking about two individuals — highly intelligent, highly ambitious — who were totally miserable, who had reached the conclusion that death was preferable to their existence, and who cried out for help.
The issue then became, is there a possibility of helping them? Hence, the large number of international people coming together to respond to the distress call of two human beings who were willing to place everything that they had on the line in order to escape their misery and to achieve their dream.
And if in fact the other 50 percent had occurred, and it had been successful, everybody would be saying, "That's exactly the right thing to do, and how wonderful. I'm so glad you were so brave and willing to do that, and aren't we wonderful as human beings?" Unfortunately, sometimes what you want to occur doesn't happen. Only God has control of that. …
BURY: Was there knowledge gained from this surgery that you can say is going to advance science and medicine beyond the fate of these two women?
CARSON: Absolutely. If I had to do this again tomorrow, I would do it in a very different way, and the reason for that is because of the knowledge that was learned here. With everything that is complex, we learn. If you don't learn, then it's an utter and abject failure. If you do learn, and you're able to apply that to the next situation, then you take away a measure of success.
BURY: So you don't consider the deaths of these two women a failure?
CARSON: I consider the deaths a tragedy, but I think there was a great deal that was accomplished through them, and I think that what they have contributed to medical science will live far beyond them.
BURY: As more advances in medicine come about, is this the kind of decision we are going to see more of? In other words, more and more elective surgeries that perhaps weren't possible 10 years ago, 20 years ago, 50 years ago?
CARSON: There's no question that as science, knowledge and technology advance, that we will attempt to do more significant things. And there's no question that we will always have to temper those things with ethics.