Conjoined twins still await medical miracle

The Jakarta Post, Jakarta

Harmaini spreads a teddy-bear blanket out on the bed in the room provided for her family by the North Sumatra administration. It's almost like home, the 33-year-old smiles to herself as she puts her twin baby girls down to rest.

Anggi and Angeli -- who are conjoined at the hip and have one leg each and share a third -- were released just last Wednesday from hospital. Though they come from a village called Simalungung in North Sumatra, the twins have been in Jakarta since the first month of their lives.

Their parents -- Harmaini and her husband, Sobari, came to the capital seeking surgery for their girls. They have stayed in the 16-square-meter air-conditioned room in Cempaka Putih, East Jakarta ever since.

As the twins' first birthdays approach on Feb. 11, Harmaini and Sobari pray for a miracle. Last week, doctors at Cipto Mangungkusumo Hospital informed the couple that, after almost 11 months of observation and tests, any surgery on the girls could be life threatening.

"I am still waiting for the latest news. The Legal Aid Institute for Health (LBHK) told us that they would inform us once they had succeeded in finding a hospital willing to do the operation, and donors," Sobari, who also has a seven-year-old daughter, Yola Fauziah, told The Jakarta Post.

LBHK chairman Iskandar Sitorus told the Post that his office had been in close contact with Soetomo General Hospital in Surabaya, which has successfully separated conjoined twins 18 times.

"The hospital just informed us today that they are willing to review the medical records of the girls to see what they might be able to do," Iskandar said on Tuesday.

"We are now collecting the necessary data to send to Surabaya. Once the surgeons, Dr. Teguh and Dr. Urip, at Soetomo Hospital have taken a closer look at the data, the hospital plans to transfer the twins there," he added.

Last week, Dr. Arwin Akib and Dr. Harry Purwanto of Cipto Mangungkusumo Hospital said that due to the twins' shared circulatory system, separation surgery could put their lives in danger.

The doctors cited the twin's inter-connected circulatory system, the congenital abnormalities of Angeli's heart and the fact that each twin has only one kidney, as risk factors.

"In children with the kind of complex abnormalities the twins have, the length of time in surgery and under anesthesia would carry the risk of circulatory complications that could reduce the flow of oxygen to the brain," Dr. Alwin Akib was quoted as saying by Kompas daily.

While waiting for confirmation from Surabaya, Sobari, who sold vegetable crackers in Simalungung, has been eking out a living selling cassava cake, locally known as getuk, at a nearby market. However, since the twins' release from hospital, the 41- year-old has been devoted to taking care of them.

"I'm ashamed that I don't have a steady job. I want to continue working as a snack vendor, but all my time is taken up with caring for the twins," Sobari told the Post.

His income of around Rp 20,000 to Rp 25,000 a day from selling cakes does not cover the daily needs of the twins.

Sobari said that Anggi and Angeli need at least 15 diapers, 300 grams of powdered milk, a few bananas, some baby biscuits and two portions of rice steamed with chicken liver, every day.

"It costs around Rp 50,000 a day for the babies' needs. Mostly, people who come to visit us bring milk and other things. Right now, the twins have only got a two-day supply of milk left," said Sobari.

While the government covered the twins' expenses while they were in hospital as their parents are welfare card (Gakin) holders, since their release its been an uphill battle to provide for the girls.

Harmaini, a housewife, said she felt no pain or anything out of the ordinary until the sixth month of her pregnancy.

"Then, I often experienced breathing difficulties late at night, followed by insomnia in the ninth month," she said. This prompted her midwife to urge her to see a doctor.

The doctor informed her of the joyful news that she was carrying twins. It was only upon the babies' delivery that it was discovered they were conjoined. Due to distress over the physical condition of her children, Harmaini could not breast-feed the girls.

Harmaini and Sobari are reluctant to return to Simalungung as they are not sure how their neighbors would treat the twins. In Jakarta, they have had to fend off curiosity seekers and the media, and they fear the situation could worsen if they returned to Sumatra.

Since Anggi and Angeli were released from hospital their condition has remained stable.

"Alhamdullilah (God willing), our babies will stay healthy. We haven't had to take them to the doctor since they left hospital," Sobari said.