TOGETHER FOR LIFE © Duncan Graham 2007
Towards the end of this month (Jan) a team of about 30 doctors and specialists in Malang, East Java, will meet to discuss an operation on a three-month old. If surgery goes ahead it could involve the amputation of two arms at the shoulder blades.
That sounds extreme, but the patient will still be left with two arms. Patient? Maybe that should be in the plural, for these are conjoined twins in a condition so rare only 25 cases have been recorded worldwide since 1684.
Naila-Laila was / were born by Caesarian section to Laseni, 28, last October when vaginal delivery became impossible. The mother and her unemployed farm worker husband Supriono, 32, already had one normal child, a boy.
The family lives in Tlekung-Gangsiran a village close to the hill town of Batu, northwest of Malang. Like many rural poor Laseni had no antenatal medical care.
The pregnancy was uneventful and ran full-term. Nothing unusual was anticipated. The birth weight was 3.35 kilos. There was only one placenta.
The babies have two heads, four arms, two chests (although externally it appears otherwise), two hearts, one vagina, one anus and two legs. Two of the arms are fused from the shoulders to the wrists and pinned behind the heads causing discomfort as the twins grow.
X ray photos show two spines coming from one pelvis. It's unclear from the images whether Naila-Laila share a stomach, spleen and liver. They have two kidneys. This is not a case of two separate bodies joined at only one place. Naila-Laila can never be divided.
Though less than three months old they already have different personalities and push and shove each other for comfort space with their free hands. When confronted by The Jakarta Post's camera Naila screwed up her face in disgust, but Laila looked curious. Nurses said one could be crying while the other is smiling.
"Most conjoined twins are stillborn," said surgeon Dr Respati Dradjat. "Of those who survive, 40 per cent die soon after. The chances aren't good. (See sidebar)
"But in this case the prognosis is optimistic. The babies are developing normally and have survived an early bout of pneumonia. All organs are functioning well.
"The girls are 4.4 kilos and in the normal weight range. There's a small defect in the left and right ventricles of one heart but it can work properly.
Dr Respati is head of the team caring for Naila-Laila at Malang's Saiful Anwar hospital, the largest government medical facility in central East Java. The twins were transferred there when two days old because the private hospital in Batu where they were born didn't have the appropriate intensive care facilities.
The parents have suffered greatly, though so far not financially. Public donations, including funds from the mayor of Batu, have kept them from having to pay bills of Rp 250,000 (US $27) a day for the twins' hospital care.
Supriono camps day and night on the veranda outside the intensive care unit to be by his daughters while Laseni is back in her village. Hospital staff said she is rejecting the babies and can't breastfeed.
"I hope they will be able to come home one day," said Supriono. "Everything is in God's hands. We must accept what He has given."
Although the medical facts behind the abnormality have been explained, the parents still believe they've been cursed by an angry Deity for sins they have committed. The family is Muslim.
Adding to their trauma are the mutterings of others. What the neighbors think and say is a major concern in small towns and villages.
"Supriono has discussed this with me," said Dr Respati. "We have psychologists and psychiatrists on the case and helping. If we operate and the babies survive then I hope they'll be able to go home and live with the family.
"Of course if this happens they may be seen as freaks. Who knows? The other problem could be if one develops at a faster rate than the other. It will be a step-by-step process.
"The functional amputation is simple. That's not the problem. We have to deliver the anesthetics to both bodies simultaneously. If surgery is undertaken, then the younger the better.
"We don't know about their level of immunity – it may be less than normal. There's a danger of organ failure. What happens if one dies and the other lives? There are no fixed decisions. This is very challenging."
Dr Respati said that although euthanasia is illegal in Indonesia a case could have been made out for basic care of the twins in the expectation that they'd die naturally. The hospital has limited resources, and money spent on Naila-Laila could have benefited 30 other children, he said.
"A similar case in Jakarta a few years ago died, but we decided that it was our duty to try and save these babies," he said. "This is a teaching hospital and maybe the experience we gain can be useful in other situations elsewhere in the world in the future. There is also a moral reason for continuing care."
RARE AND COMPLEX
Few conjoined twins (also known as Siamese twins) are born. Three have been recorded in Indonesia. The previous known case before Naila-Laila was in Nigeria in 2005.
However other conjoined twins may be naturally or artificially aborted, or their births and deaths kept quiet.
There are many differences in the cases, depending on where the bodies are joined and what organs are shared. The Malang case is known as dicephalus.
In the 19th century two men in a similar situation lived till they were 60. More recently there's a case of two girls in Minnesota called Abigail and Brittany Hensel. They were born in 1990 with dicephalus, similar to Naila-Laila and are still alive.
The US twins had one extra arm that was amputated. When they were 12 they also underwent operations to correct curvatures of their spines.
These young women appear to have adjusted well, and have openly discussed their situation on TV. Each twin controls her own arm and leg, but have learned to coordinate. They are reported to play sport, do other standard Western teenage activities and expect to graduate from high school this year.
Little is known about the condition or why it's caused. Genetic and environmental reasons have been suggested.
It is believed conjoined twins are created around the 13th day of pregnancy. There's incomplete separation of the fertilized ova that would otherwise naturally develop as separate twins.
(First published in The Jakarta Post 17 January 2007.)