Support needed to help vein of galen malformation patients

Maria Endah Hulupi, The Jakarta Post, Jakarta

For Ina, a teenage girl from a small town in Bengkulu, her headaches and worsening vision have been very annoying. Her swollen left eye looks like it will pop out of its socket.

Acting on suggestions from relatives to visit a local ophthalmologist, Ina was shocked when she was diagnosed as having a huge tumor in her left eye. But after a series of more thorough examinations, the doctor found out she had a swollen vein in her brain, right behind her eyes.

Ina was later transferred to the Cipto Mangunkusumo General Hospital, Central Jakarta, where neurologists confirmed she suffered from vein of galen malformation. It means the accumulation of blood in her brain had developed into a mass the size of a tiny ball, further pushing her left eye outward. Later on, she was transferred to undergo embolization procedure at the Siloam Gleneagles hospital in Karawaci, Tangerang.

"She was sent here (to Gleneagles) because a foundation has agreed financially to support the treatment. We couldn't afford to pay for the medical services," said Nilveda, a distant relative of Ina, almost in tears.

Ina is lucky to have received financial assistance from the National Brain Foundation (NBF). She is one of only around 100 patients from a low-income family who has received such treatment from both the foundation and the hospital. Data from the hospital shows that all treatment has been successful.

Vein of galen malformation is a very rare condition in Indonesia. The illness affects blood vessels in the brain. Data show this problem affects mostly babies and children, with an estimated incidence of 10 to 12 babies in 100,000 births.

"It's an abnormality that occurs during embryonic development that will cause abnormal communications between arteries and veins in the brain. It results in an accumulation of blood, leading to swollen blood vessels in the brain," said Prijo Sidipratomo from the Gleneagles' interventional radiology department.

New-born babies with vein of galen malformations can show symptoms of heart failure due to this abnormal situation. Children with this abnormality develop hydrocephalus (enlarged head) and seizure. Older children and adults also complain of severe headache and vomiting.

Diagnosis may be confirmed by CT (computer-assisted) scan, digital subtraction angiography (DSA) and MRI (magnetic resonance imaging).

"It can also be detected while the baby is still in the womb," Prijo said.

As for treatment, he said the illness could be treated by embolization procedure as it usually occurs deep in the brain, making brain surgery a risky treatment.

The two-hour embolization procedure is performed by inserting a guide catheter into the femoral artery in the leg. The neurologist will carefully guide the catheter to the shunt area, where a glue-like substance, hystoacryl blue, is released to shut off the blood vessels that feed the swollen vein.

"During the procedure the patient is awake but they won't feel any pain," said Jacub Pandelaki also from the Gleneagles' interventional radiology department.

Some cases, Jacub said, require several embolization procedures to ensure that abnormal communications are shut off.

"But they must be performed over a period of time to prevent complications," he added.

Jaya Suprana, a jamu (traditional herbal medicine) businessman and talkshow host, attended the briefing and stressed the need for public support for patients on low incomes to have access to proper brain intervention.

"What the country needs is health insurance to enable all citizens to have equal rights of access to medical treatment; until such time public (financial) support is needed to help foundations like NBF," said Jaya.

"Immediate intervention is needed to end the patients' suffering and save their lives. Otherwise, they would only have months to live," said Eka Wahjoepramono, chairman of NBF.

Financial support can be channeled to Lippo Bank, Siloam Gleneagles hospital branch, account number 579-30-88888-0 a/n National Siloam Brain Foundation, Jl. Siloam No. 6, Lippo Karawaci, Tangerang.