“I’m not asking for much, I only hope that my daughter can live for as long as she could,” said a 27-year-old mother whose child suffers from hydrocephalus.
According to Norainie Panggau, her daughter Nur Syahfinie, has a different physical condition from other children because of the excess fluid in the brain causes her two-year-old to have a larger head.
“From the time she was born (on April 17, 2019) until today, apart from breastfeeding, she has only been able to swallow porridge and infant cereal.
“Despite having undergone operation twice, the situation is still the same.
“Syahfinie, who has been bedridden since birth, is also unable to sit, stand, run and talk like other children,” she said, adding that her child’s health at the moment has deteriorated and she can only drink milk through a tube.
Even sadder, the two-year-old, who has been admitted to Sarawak General Hospital since last Monday, is completely dependent on oxygen machines as her heart is getting weaker.
Reminiscing, the mother of three from Sibu, said that her child’s health problem was first detected after she did a scan when she was about to give birth.
“From the scan, the doctor detected that there was excess fluid in Syahfinie’s brain.
“In addition, because the size of her head was also large, the doctor had to deliver her through Caesarean, said Norainie.
“After receiving the news, I was sad and discouraged, but I remained positive and hoped that a miracle would happen.
“Syahfinie underwent her first surgery (to remove excess fluid) a week after she was born, but less than a month her head was getting bigger.
“When she was three months old, she had surgery again but then there were some complications where her breathing stopped and she had to be admitted to the Intensive Care Unit (ICU) as she needed the help of oxygen machines,” she said, adding that because of this incident she felt traumatise to bring Syahfinie to the hospital.
Further elaborating, Norainie explained that despite having undergone surgery twice, Syahfinie’s head was getting bigger and had to be hospitalised recently because she suddenly having trouble breathing, her face was bluish and there was mucus coming out from her mouth.
At the same time, she said her daughter’s head was also injured and it was understood that her scalp is now getting thinner due to the growing size of the head.
When asked on her hopes and needs that she might need, Norainie was silent while holding back tears and then said she needed nothing and she contented with the Almighty’s will.
According to her, her daughter was not allowed to undergo a third surgery because the risk was very high.
On finances, the Iban woman admitted that her family did not have a fixed income because her husband only worked as a labourer and they only depended on her husband’s rental house income of RM700 a month.
However, she said they were very grateful to be met with many parties who generously helped them such as Wan Huzaimi Wan Azami, the founder of Grab Jenazah Free, and Jamaiyah.
Norainie, however, said she had never applied for any government assistance as she did not know the procedures and did not have transportation.
Norainie and her husband, Johari Bolhaji, 51, with their three children aged 6, 5 and 2 now live in Kampung Sungai Bedil here.
Meanwhile, Minister of Welfare, Community Wellbeing, Women, Family and Childhood Development Datuk Seri Fatimah Abdullah when contacted said she had obtained all Syahfinie’s full information and had instructed Welfare Department officials to take further action as fast as possible.
In the meantime, people who want to donate can contact Norainie at 011-16420545, Jamaiyah (013-5610114) or Wan Van Jenazah (016-5919755).
For information, hydrocephalus occurs for several reasons, among them there is an obstruction that prevents the normal drainage of fluid in the brain that will result in increased pressure in it.
This condition will interfere with the development of the brain and spinal cord, and can cause permanent nerve defects and death if left untreated.
It can also contribute to the existence of other diseases such as tumours, infections and bleeding if there is a disturbance in the fluid flow in the brain. However, the main cause of the disease is still unknown.
