KUALA LUMPUR: ‘Big head, weird head, head like a mushroom’ - these are among the distasteful and insensitive remarks often hurled at Hydrocephalus patients, namely, those with excess liquid inside the brain which forces the head to swell beyond normal.
Several parents of these special children have conceded, that acquaintances and even some of their own relatives had uttered words to insinuate that what occurred to their loved ones was the result of their own previous transgressions.
Malaysian Hydrocephalus Patient Association president Azah Hana Ahmad Azahari said many parents lamented such ridicule from the public.
“The perception of some members of the community upon coming across parents with their children who are suffering from Hydrocephalus is that it is retribution for a past mistake or sin. This greatly affects their emotions, and it must be stopped.
“If they are Muslims, they must accept it as a test from Allah, but most importantly, parents must seek early treatment when their children are detected with this disease,” she told Bernama here recently.
Azha Hana said the association was set up on June 17, 2015, and had about 600 communities nationwide.
She said the communities were formed as a platform or support group to help parents, families or Hydrocephalus patients morally and financially, as well as by providing advice.
As a mother to a Hydrocephalus patient herself, Azah Hana said most families faced financial problems, especially in terms of financing the cost of installing a shunt, a special tube that is inserted in the brain to help drain the cerebrospinal fluid and redirect it to another location in the body where it can be reabsorbed.
According to her, the procedure costs between RM3,000 to RM8,000, depending on the type of tube.
Meanwhile, Khairul Anuar Samsudin, 33, also admitted that he had personally heard people ridiculing his youngest child, Ilham Affan, five, who was confirmed to be suffering from Hydrocephalus at the age of nine months.
“A woman said in Javanese during a ‘rewang’ ceremony (cooking gotong-royong) in Johor that my son’s head was ‘like a mushroom’.
“Much worse, her son, who was still young, also said the same thing without being reprimanded,” said Khairul Anuwar, who worked as an Islamic Affairs Assistant at the Negeri Sembilan Mufti Department.
He was aggrieved at the attitude of society, but was thankful because his son’s condition did not affect his nervous system and brain, and this allowed the youngest of two siblings to attend normal kindergarten in Seremban.
He also drew attention to the fact that many were unaware that Hydrocephalus patients needed more expenses for clothes, besides costs for the treatment and medicine, as well as other needs such as milk.
“They cannot wear a normal T-shirt because of their rather large head sizes. So, most shirts bought must have buttons at the front.
“Meanwhile, some shirts such as Baju Melayu must be custom-made and this is the financial burden that the public cannot see,” he said.
Nur Rabiatul Rosli, 13, who has suffered from Hydrocephalus since birth, conceded to the fact and said many of her clothes including school uniforms had zips or buttons to allow them to be worn more easily.
The youngest of four siblings, who is a student with special needs at SMK Miharja here said despite having a shunt installed from the age of six, she was thankful that she could manage herself and go about her daily life like any other child.
“I can play, but I have to be careful and not be too boisterous as my head is very heavy, so I can easily fall if am not careful,” said Nur Rabiatul, who spoke fluently during an interview via video call with Bernama.
Asked about her ambition, Nur Rabiatul, who only began to walk at the age of three, could not keep her composure when admitting that she was aware of the fate of someone with her condition, and dared not to harbour any lofty dreams, apart from doing her best in studies.
The special child ended the conversation with Bernama with the message: “Parents or families with a child like me must accept it as a test from Allah.
“To fellow friends who are like me (Persons With Disability), we must remember, that we are the much-beloved children”.-Bernama
