Ladan and Laleh Bijani, the conjoined twins who died yesterday during surgery to separate them, were doubly unfortunate. Cases of craniopagus twins, who are joined at the head, are so rare that they occur only once in every 2 million live births. In Singapore, where the unsuccessful operation began on Sunday, surgeons have managed to separate babies born with the condition. But the Bijani sisters came from Iran, a country where such pioneering medical procedures are not available to ordinary people.
They decided to risk the operation at the age of 29, in what became the first attempt to separate adult craniopagus twins, and they had to go abroad to do it. Ladan died first, after it became clear that the procedure was going to be even more difficult than surgeons at the Raffles Hospital had anticipated. They discovered that the sisters' brains were more closely linked than previously thought, and neurosurgeons had to cut through the tissue "very carefully, literally millimetre by millimetre".
They died within 90 minutes of each other, putting an end to their dream of achieving normal lives; they had already obtained law degrees, and Ladan wanted to be a lawyer in their home town of Shiraz, while Laleh hoped to become a journalist in Tehran. This geographical separation was impossible without an operation, and the twins spoke movingly before undergoing surgery about their hopes. "We've been praying every day for our operation. We are excited about it as we've waited 29 years," they said in a statement released by the hospital.
The sisters' long wait for surgery is only one uncomfortable aspect of this tragic story. The first attempt to separate craniopagus twins was carried out on infants as long ago as 1952, and it is hard to believe that the women would have waited so long if they had been born in a European or North American country. The risks of the procedure increase with age and the Bijani sisters were turned down by hospitals around the world when they began to seek surgery as adults.
In 1996, German surgeons refused to operate because they considered the procedure too risky, but tests at the Raffles Hospital, in Singapore, showed that the twins were suffering ill-effects from the condition, which were likely to get worse. In that sense, the sisters faced a grim choice: remaining as they were, with deteriorating health and all the limitations imposed on them by their physical condition, or going ahead with an operation that might prove fatal.
But there is also a sense in which they became a spectacle, trading their privacy for the slender chance of a normal existence. Photographs and television pictures of the sisters flashed round the world in the run-up to the operation, inevitably inviting comparisons with the 19th century, when the disabled and disfigured were paraded as entertainment. The most famous case was that of John Merrick, the so-called Elephant Man, but there was also a long tradition in Europe of displaying "natives", people from what we now politely call the Third - or developing - World for "civilised" folk to gawp at.
The Bijani sisters, who were from a developing country and arresting to look at, had the misfortune to fall into both categories. In a generous gesture, the doctors who agreed to treat them waived their fees, and it is certainly hard to imagine their arrival in Singapore and subsequent treatment at the hospital passing unnoticed. In any case, they needed to find as much as £175,000 for post-operative care and medication, a sum that could be raised only by setting up a charity and consenting to publicity. Presumably, that is one of the reasons they agreed to appear at a press conference, which has become the contemporary equivalent of a Victorian freak show.
It is also a device resorted to by desperate people (not just patients, such as the Bijanis, with ghastly conditions, but everyone from abandoned wives to disgraced sports stars) in the hope of controlling what might otherwise become an even greater media storm. The worldwide publicity attracted by the twins is an uncomfortable reminder of the human tendency to voyeurism, which has once again turned an essentially private tragedy into a public narrative of drama and suspense.
Well before the operation began, sympathy for the women's awful predicament battled with curiosity, prompting vulgar and intrusive speculation about their everyday lives. Ironically, the lack of privacy created by their physical condition - most of us can scarcely begin to imagine what it is like to be permanently joined to another person - thus became the excuse for an even larger invasion of their privacy by the world's media.
We can console ourselves by admiring their courage, but we are also guilty, temporarily at least, of reducing them to a story. And the "human interest" stories that appear in newspapers and on TV exist in a narrow emotional register, where hope generally triumphs in the face of adversity. In this instance, two young women were forced by the circumstances of their birth to take a terrible risk, and lost their lives as a result. It is a story about individual courage, but it is also about the grotesque inequalities of the modern world and the price people from developing countries have to pay to get medical treatment.Reuse content