You're lying in bed, you want to play with your twin, but you can't see him, although he is right behind you. Reem Leila considers the case of conjoined twins The birth of two connected babies is traumatic, we are all reminded by the very public case of Mohamed and Ahmed Ibrahim, born on 2 June 2001, to a working class family in a remote Egyptian village. The playful twins, who are connected at the crown of their heads, spent the first year of their lives on their backs, often reaching back to grab the other's ear or nose. They also appear eager to move, trying to push each other up. One of them is docile and peaceful. The other one is active and irritable. They can roll over and speak a bit. The babies and their doctors flew to Texas for consultations and possible medical intervention by craniofacial specialists. So far, the boys are still undergoing multiple tests that would help the doctors determine the best course of action. After more than a year of just laying on their backs, the backs of the boys' heads are flattened. If they survive separation surgery, the next move would be to reshape their heads, to give them a chance of leading normal lives. Conjoined twins are extremely rare, occurring in as few as one in every 100,000 births. About one in 200 sets of identical twins are born conjoined. Identical twins, we all know, originate from a single fertilised egg that splits into two within the first two weeks after conception. In the case of conjoined babies, however, the process stops before it is complete, leaving a partially separated egg to develop into a conjoined foetus. No one knows precisely why this happens. Scientific research has resulted in several theories, all of which involve certain factors that may raise the possibility of twins failing to completely separate. Environmental pollution, smoking parents (the mother in particular), taking unsuitable drugs, and being exposed to X-rays have all been blamed for this unusual eventuality. But genetic factors could also be responsible. The case of conjoined birth is still a mystery, says Dr Nasser Abdel-Al, head of the Neonatal Surgery Department at Abu-Rish Hospital, who is now accompanying Mohamed and Ahmed on their trip. During the past 15 years, Abul-Rish Hospital has received 10 cases of conjoined twins, of which only one case has survived. Three twins died after their separation, and six died with no attempt made at separation, as their cases were deemed to be beyond surgical intervention. Dr Abdel-Al points out that the separation surgeries in which one of the twins was sacrificed were mostly unsuccessful, due to the wide range of medical complications that occur during or after the operation. Conjoined twins are more often females than males (the ratio is 1:3), and the fatality rate is high for both sexes. Most (over 75 per cent) die within 24 hours of birth. Medical records show that the survival rate of conjoined twins ranges between five per cent and 25 per cent. The historical records of the past 500 years speak of some 600 surviving cases of conjoined twins. There have been approximately 200 attempted surgical separations of conjoined twins, 90 per cent of which occurred after 1950, says Dr Abdel-Al. In February 1996, two female conjoined babies were born in Sandoub, near Mansoura. They were connected at the stomach and pelvis. The 30-year-old mother, Iman Gom'a, was an agricultural worker who already had a normal six-year-old daughter, Samar. During labour, the midwife attending to Gom'a at home realised that this was going to be a complicated delivery. She referred the family to a private clinic, where Gom'a gave birth to the twins. The case, recalls Gom'a, created a sensation. In fact, the twins' life was in immediate danger, and not just for medical reasons. "Our village is a feudal community, steeped in superstition. When the twins were born, none of our relatives or neighbours, especially pregnant women, would touch them for fear of coming under a spell. People saw the twins as a bad omen. They wanted to condemn them to death. The people of the village wanted to separate the twins with everything from saws to red-hot wires." Luckily, Gom'a refused to leave her twins to the tender mercies of the villagers. She patiently took care of them and, within a year and half, the girls learnt how to walk, run, eat, and sleep, however awkwardly. But things were not getting any easier, for the family. The twins were constantly harassed, for the neighbours considered them a monstrosity. By the time the girls were 18 months, Gom'a's husband, also a peasant, insisted on separating them. "I was tired of the way people were treating us, and how they mocked my babies," says Gom'a. In September 1997, the Gom'a twins were successfully separated. "The operation was very dangerous, and the doctors told us that we were too late, that we should have split them the minute they were born," he says. The girls are currently leading a fairly normal life, although people have not forgotten how they once looked. Dr Ahmed El-Hadidi, professor of paediatric neurosurgery at Qasr Al-Aini Hospital and one of the team who worked on separating the conjoined girls, still remembers the case. One complication, he says, was that the girls shared a single liver. An entire medical team had to working for 22 hours to divide the liver into two parts. The girls were split successfully, but suffered from a variety of complications during the operation, says El-Hadidi. There are dozens of types of conjoined twins. The most common form of conjoined twins (35 per cent to 40 per cent of all cases) is of those who share part of the chest wall, possibly including the heart. Twins united from the waist to the lower breastbone account for about 32 per cent of conjoined cases. Twins positioned back-to-back, with usually a posterior connection at the rump constitute about 20 per cent of documented cases. Some six per cent of all conjoined twins are joined at the bottom of the lower backbone. Those joined at the cranium (the top of the skull) form approximately two per cent of all cases. Theirs is a complicated case and separation is quite difficult, says El- Hadidi. Very rarely, a child is born with two separate heads and necks, and usually dies within the first 24 hours, notes El-Hadidi. These days, most conjoined twins are successfully identified during prenatal examinations. Some types of conjoined twins are much easier to separate, while others involve complicated and costly procedures (as in the case of Ahmed and Mohamed Ibrahim) and may give rise to ethical and moral questions, particularly when the twins share internal organs. The operation, some argue, may actually heighten their risk of survival. Occasionally, the life of one twin has to be sacrificed. "In cases where one of the twins must be sacrificed though they could live as they are, [separation] is totally forbidden by Islamic Shari'a. You cannot sacrifice one life to save another," says Grand Mufti Sheikh Nasr Fareed Wasel. "It is unethical and sinful to kill a living baby just because he is conjoined. It is forbidden to treat children with unusual anatomies by a different set of values," Mufti Wasel says. But the mufti sees no harm in surgical separation if the operation is not deemed threatening to either twin. Because of the unusual burden such cases place on families, the mufti urges the creation of "special agencies" to help parents of conjoined twins cope with the many problems they are likely to encounter.
