AWARENESS of spina bifida, a spinal cord defect, is low in Malaysia, where the condition affects nearly one in every 1,000 live births, the Spina Bifida Association of Malaysia (Sibiam) said.

The condition refers to a neural tube defect, whereby the spinal column does not form properly, leading to problems with mobility, bladder and bowel movements.

The use of catheters may be required to aid in waste removal from the body.

With no cure yet available, a newborn with the worst level of spina bifida may not live past his or her first week.

There are three categories of spina bifida: occulta, meningocele and myelomeningocele. They refer to the degree of severity and symptoms.

Association vice-president Prof Dr Amara Naicker told The Malaysian Insight that public awareness of the condition is still low.

She said there were cases where patients with the condition did not know what they were suffering from, and in some cases, it was the doctor misdiagnosing them with a different disease.

“They (parents) come to us after many years saying, we were told that our child has polio, or things like that.

“Not everybody who has spina bifida is aware of it, especially the ambulatory ones. They don’t really look hard to find out what is wrong,” Dr Amara said, referring to patients who received outpatient medical care.

Awareness in rural areas is even lower as some parents choose not to pursue treatment due to transport costs and repeated hospital visits.

The level and standard of care on the peninsula’s east coast is also low, said Sibiam secretary Dr Kribanandan GN.

Treating spina bifida requires multidisciplinary care, which hardly exists in areas with few specialists, he said.

Dr Amara added that hospitals generally lacked medical specialists in this field.

“People knowledgeable in spina bifida are needed. Nurses who can function as a counsellor to give good advice to the patient and support them are also needed.”

A counsellor is important because people suffering from these conditions could develop mental health issues, such as depression.

She said a patient with spina bifida will need somewhere between RM420 and RM1,500 a month to cover the cost of diapers, catheters, medications, therapy sessions, walking frames and other forms of aid.

Dr Amara recommended that welfare departments subsidise these items instead of disbursing monthly monetary aid.

“We still have a certain number of children with spina bifida who are not getting what they need,” she said.

Dr Amara also called for government supported research to be carried out. Schools should have the basic amenities in place to enable students with mobility issues can move around.

Dr Kribanandan added that Sibiam needed funds to start a training programme for paramedics and doctors to learn about handling special needs of spina bifida patients. – September 16, 2019.