PETALING JAYA: Eight-year-old Muhammad Irham Itqan Shaiful Azli was born with hydrocephalus and spina bifida. He had undergone four surgeries to relieve the pressure on his brain and close the opening in the lower part of his spinal canal even before his first birthday.
Irham’s mother, Norkhairina Sh Ab Hamid, said she learnt of his condition while pregnant at 30 weeks.
“My doctor said he could detect Irham’s swollen head. It was later that we discovered he had spina bifida too,” she told theSun.
She then decided to search the internet for more information on spina bifida.
“It was distressing as most of the studies or information were of cases abroad. Thankfully, I stumbled upon Dr Noraishah Mydin Abdul Aziz’s blog concerning her journey of living with it, and studying the care that is needed. It gave me some assurance that there was support for my son,” she said.
Norkhairina had a caesarean section, after which Irham was rushed from Putrajaya Hospital to Kuala Lumpur Hospital to close his open spinal canal.
At two days old, Irham had to undergo another surgery to insert a ventriculoperitoneal shunt, followed by subsequent procedures as there were blockages.
With all that happening, Norkhairina was tested to her limits.
“I had to take a month’s unpaid leave during his first year. Luckily, my husband and our families were so supportive,” she said.
Irham had trouble while feeding too.
“He would vomit when he could not swallow. We had to switch between breastfeeding and formula milk to ensure he had the proper nutrients.
“At 10 months, he experienced crossed-eyes because his shunt was blocked. He also had a seizure as he was being prepared for his final surgery. All the while, my husband was calm. He would say: ‘Let us just follow the doctors’ advice and monitor his progress’.”
The final obstacle was for Irham to learn to walk.
“We had been told that his nerves (in the spine) had been affected and he would never be able to run or walk. Each month, we would take him for physiotherapy but there seemed to be no progress.
“We finally took him home and consulted Dr Noraishah on the next move,” she said, adding that a detethering procedure on his spinal cord was completed two years ago.
“It was done in an hour and he was required to defecate, which otherwise, would have to be done manually,” she said.
