Conjoined twins still await medical miracle
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.
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.