Conjoined Twins Die in Risky Surgery

Experts debate whether it will be tried on other adults

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HealthDay Reporter

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TUESDAY, July 8, 2003 (HealthDayNews) -- The historic operation to separate Iranian twins Ladan and Laleh Bijani ended Tuesday with the death of both sisters and an outpouring of grief from around the world.

As housewives in Tehran stopped in the middle of their day to sob, surgeons in the United States also expressed their sorrow.

Medical ethicists, meanwhile, debated whether the risky operation was the right thing to do. While some said the women were adults who knew the risks, another wondered whether even the doctors realized how dangerous the surgery was.

"This surgery was a great humanitarian effort, one which we undertook with a full understanding of all the risks involved," said Dr. Benjamin Carson, director of pediatric neurosurgery at Johns Hopkins Children's Center, who took part in the operation. "The women certainly understood the risks and were determined to proceed. I felt compelled to get involved to help give them their best chance at survival and separation, and I have no regrets over my decision. No act is a failure if you learn from it."

"We are terribly saddened to learn that conjoined twins Ladan and Laleh Bijani did not survive the surgery to separate them. Their courage and determination to proceed with the separation surgery in the face of tremendous odds speaks volumes about their desire to live more normal lives, separate and independent of each other," Drs. Kenneth E. Salyer and David Genecov of the World Craniofacial Foundation in Dallas said in a statement.

Salyer will be performing surgery this summer to separate 2-year-old Egyptian twins Ahmed and Mohamed Ibrahim, who are joined at the crown of their head.

The 29-year-old Iranian sisters were also joined at the head, although this rare physical anomaly did not prevent the two from finishing law school and gathering a mass of admirers around the world.

The twins understood the enormous risks of the unprecedented procedure to separate them, yet both professed a desire to live separate lives.

Procedures to separate conjoined infants have been performed for more than 50 years, but the surgery had never before been tried in adults. Ladan and Laleh's surgery was performed at Raffles Hospital in Singapore and involved 12 surgeons, eight anesthesiologists, and four radiologists along with about 100 medical support staff.

According to statements issued by the hospital, the sisters received anesthesia on Sunday morning (Singapore time, which is 13 hours ahead of Eastern time). Vascular surgeons then took two sections of veins from Ladan's right thigh to be used as a graft for bypass. The twins had been sharing one vein their entire life.

At 8:15 p.m. that night, surgeons peeled back Ladan's and Laleh's scalp. Two hours later, the neurosurgery team began removing bone from the front of the skull, a procedure that took hours longer than anticipated because the bones were so thick.

Neurosurgeons then began to separate the brains. This process was painstakingly slow because, although the brains were distinct organs, they did adhere to each other. The twins later started to lose blood pressure and to bleed profusely.

"The vascular reconstruction is the hardest part," explained Dr. Howard Weiner, a pediatric neurosurgeon at New York University Medical Center and a member of the American Association of Neurological Surgeons. "Separating the brain tissue and separating the bone and the skin and reconstruction is really kind of routine for us. The real challenge is reestablishing two distinct blood systems... It's basically a fancy bypass operation involving the vessels outside the brain, but the problem with this is that there are huge volumes of blood that go through that. You can basically bleed out in a very short period of time."

"Despite the best efforts of the medical team, Ladan passed away at 2:30 p.m. Laleh passed away shortly after, at 4:00 p.m.," Raffles Hospital announced in a press release.

The twins were still under anesthesia when they died; the procedure had been going on for 50 hours.

It's not clear what this experience will mean -- if anything -- for separating the handful of other adult conjoined twins alive in the world.

"I think the death of the twins is a tragedy but the deaths do not raise a huge ethical red flag," said Arthur Caplan, professor of bioethics, chairman of the department of medical ethics, and director of the Center for Bioethics at the University of Pennsylvania in Philadelphia. "They gave full consent to this desperate attempt to separate them."

Nancy Segal, author of Entwined Lives and director of the Twin Studies Center at California State University in Fullerton, agreed. "The first thing, of course, is that the decision is made by the twins themselves. In any kind of procedure like this, you do a cost-benefit analysis. Since they went ahead with [the procedure], it's safe to assume the situation was unsatisfactory as it was."

The issues are slightly different when explored from the surgeons' and hospital's point of view.

"The area you're approaching is the ethics of innovative therapy, which is a little different from research," said Dr. Robert Orr, director of medical ethics at Fletcher Allen Health Care and the University of Vermont College of Medicine in Burlington. "When you have a new procedure, there isn't any protocol. You just try it."

Before doing innovative therapy, Orr said, one needs to look at its scientific background, how experienced the practitioner is, and whether the institution takes its mission of "do no harm" seriously.

Caplan seemed to think these criteria were fulfilled. "Doctors need to be cautious in the risks they take. But in this case their patients appear to have known the risks and the doctors felt there was a reasonable chance for success," he said. "So while the outcome will set back further attempts at this type of very complicated surgery in adults, it is not in itself an indication that the doctors did anything immoral in attempting the surgery."

Alice Dreger, a medical historian at Michigan State University and author of the forthcoming book, One of Us: Conjoined Twins and the Future of Normal, takes a somewhat different view of things. "The women were basically healthy. It's pretty clear they would have lived for several years," she said. "To what degree did they really understand the risks?" In particular, Dreger is concerned that the surgeons did not know in advance how thick the skull was going to be and that the brains were so intimately joined.

It's not even clear that the sisters would have survived if they had been much younger. Dreger pointed to the case of Ahmed and Mohamed, waiting for surgery in Texas. "They are basically healthy. They have good mental function and the separation is being pursued anyway. I think there's some real legitimate question as to why," she said. "There's a lot of questions as to whether separation is really in their best interest. Separations of heads generally turn out badly."

More information

For more on Ladan and Laleh, visit Raffles Hospital. This Web site has more on conjoined twins.

SOURCES: Nancy Segal, Ph.D., director, Twin Studies Center, California State University, Fullerton; Arthur Caplan, Ph.D., professor of bioethics and chair, Department of Medical Ethics and Director, Center for Bioethics, University of Pennsylvania, Philadelphia; Alice Dreger, Ph.D., medical historian, Michigan State University, East Lansing; Robert Orr, M.D., director of medical ethics, Fletcher Allen Health Care and the University of Vermont College of Medicine, Burlington; Howard Weiner, M.D., pediatric neurosurgeon, New York University Medical Center, New York and member, American Association of Neurological Surgeons; Raffles Hospital, World Craniofacial Foundation, Johns Hopkins Children's Center news releases; wire services

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