‘What’s the point of giving birth when you know the child will be disabled,’ was what was uttered by Camelia Affendi’s doctor when the baby in her womb was diagnosed with hydrocephalus.
According to her, when she was six months pregnant, her doctor scanned her baby and stated that it had a bigger head than usual.
After doing a 3D scan, it was then confirmed that she, who was 31 years old at the time, was pregnant with a child suffering from hydrocephalus.
Now, many might ask, what exactly is hydrocephalus? Putting it in layman’s term, it is a medical condition commonly known as ‘water on the brain’.
According to the American Association of Neurological Surgeons, hydrocephalus occurs when there is an abnormal accumulation of cerebrospinal fluid (CSF) in the cavities of the brain called ventricles. CSF is a clear fluid that surrounds and protects the brain and spinal cord.
When there is too much CSF in the brain, it can cause pressure to build up inside the skull, which can lead to various symptoms and problems.
It stated that in infants, it can cause the head to enlarge because their skulls are still developing and can expand to accommodate the extra fluid.
With her shattered heart upon hearing the news, she rushed home and asked her family and her in-laws whether or not anyone had such a similar condition as her doctor said that it might be genetic.
However, to her shock, none of her family members nor her in-laws have it. To top it all, even her husband could not accept the fact that their baby is suffering from hydrocephalus.
“As a mother, of course it was shocking to me hearing that my child is suffering from hydrocephalus. I mean, no mother wants their child to be born in such a way.
“But nothing hurts more than hearing your own doctor or even someone close to you say that there is no point in giving birth to a disabled child.
“However, I firmly told myself that whatever this child’s condition is, I will accept him as he is and will take care of it as best as possible,” she shared with New Sarawak Tribune.
Despite being hampered by such a news and her husband refusing to accept the fact, Camelia remained strong for her and her unborn child.
“It took two to three months to talk my husband to accept the reality. I always tell him to think positively and reminded him that this is God’s will and that we are the chosen people to be blessed with this ‘anak syurga’.
“Alhamdulillah, over time, he accepted the fact and became more positive,” she said.
Camelia, now 41, reminisced that during the birth of her child, she had to go for a caesarean section as her child’s head circumference was 51 inch.
“At that time, I saw that it was not as big as they (the doctor and nurses) pictured it for me. But alhamdulillah now, my 8-year-old child, Muhd Dhabit Falih Ermandi, has a much smaller head circumference and is living healthily,” she said.
Following this, she also said that due to her child being the first one to have such disability in the family, she had researched, read through and consulted fellow nurses, doctors and parents of hydrocephalus children on the said disability.
The Operations Assistant at SK Rakyat admitted that raising such a child was a struggle for her.
However, it did not dampen her spirit to find a cure or to make her child experience life as a normal child.
With that, she said, she had travelled all around Malaysia to find the best way to help her child.
“Ever since Dhabit was born until now, we never stopped to find treatments for him. We also went for a traditional massage for him to strengthen his nerves.
“There was one time when my son suffered from seizures until he had to be admitted to the Intensive Care Unit (ICU) and at that time I was also informed that there was no hope for him to recover.
“However, I always think positively. Alhamdulillah, Dhabit’s condition gradually improved and we also used traditional treatment for his seizures,” she said.
Looking at her child’s condition, Camelia said that the challenges she faced in taking care of her son was all worth it.
“In the past, Dhabit’s condition was very unstable and we had to regularly take him to see the doctor for check-ups, which is once every three months.
“Alhamdulillah, when he showed positive progress and his checkups were reduced to six months, to now only once a year,” she said happily.
As the mother of a child suffering from hydrocephalus, she shared that there is lack of awareness of such disability among the community here.
“Not only is there a need for this disability to be known to others, we also need a platform for the parents to share their thoughts and experiences on the disability,” she said.
With that, she stated that she had created a WhatsApp group as a support platform for parents who have children suffering from such a disability.
“I believe that sharing experiences between us and ways to take care of such a child is important. This is because parents play an important role in the recovery process of the child.
“We cannot simply only depend on hospital treatments. Home treatments and our efforts are equally important,” she said.
Despite being put in such a fate, Camelia remained positive when dealing with the community and was not ashamed to tell others about the condition of her child when she was asked about her child’s head size being larger than normal.
Touching on her child’s life, she said that Dhabit has shown an interest in singing since the age of 8 months old.
“His interest also became more evident when he was 4 years old. He was even invited to sing on occasions.
“I believe that Dhabit’s interest in singing is because I myself also often perform songs during my pregnancy with him, even now I also bring him along if there is an invitation,” she said.
Camelia said for the sake of her child, she takes the issue of social interaction seriously. That is why she always brings Dhabit around to her involvement in charity work, aerobics, karaoke and programmes involving autistic children.
“Through programmes such as these, I met mothers who had the same fate. We exchange opinions and experiences on how to care for our special children.
“With the active involvement, I am glad that it makes my son very friendly when he meets people, regardless of age, he will talk to them,” she said.
Following this, she also shared that when Dhabit was 5 years old, it was difficult to get early education for him due to his condition.
“I never gave up hope for my child to get a proper education. Alhamdulillah, my son managed to get a place after applying at the ninth kindergarten, which is Tadika Muda Hashim.
“Growing up, my son received regular education instead of special education based on the doctor’s recommendation and positive development. Since preschool, Dhabit has been educated at SK Rakyat here,” she said.
Having said that, Camelia expressed her hopes that her son will continue to experience positive development so that he can be independent and able to manage things by himself. “I also hope that the community out there is aware and understands this disability,” she said.
