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Daayim Fazili with his wife Camellia and son Omar in their Ajman home. An investigation by Dubai Health Authority found that a multi-specialty hospital failed to detect fetal distress during delivery causing severe damage to Omar’s brain. Image Credit: Ahmed Ramzan/Gulf News

Ajman: “Unplug him. He’s not going to make it. Even if he does, he will never be able to walk or hear. For all you know he will remain in a vegetative state all his life,” the doctor told Lebanese mum Camellia Mohammad as she stood by the hospital ventilator on a muggy afternoon in June 2017 and watched helplessly as her preterm born child battled for life.

Omar Fazili, born premature at 24 weeks, had spent over three months on the ventilator. There was no improvement in his condition. He had contracted several infections. Worse, he had now been diagnosed with grade four Intraventricular Haemorrhage (IVH) resulting in a parent’s worst nightmare -- cerebral palsy.

A leading cause of disability in young children, the life-long condition affects the communication between the brain and the muscles, causing a permanent state of uncoordinated movement and posturing. Every hour a baby is born with cerebral palsy (CP).

Medical malpractice

Thinking Omar was one of those unlucky children, his parents resigned themselves to fate until a Dubai Health Authority (DHA) investigation revealed that their son’s cerebral palsy was not caused by genetic or environmental factors but was a result of medical malpractice by a multi-specialty hospital in Dubai where Camellia was undergoing treatment.

“The DHA set up a high powered committee to look into our complaint. Their findings confirmed what we had suspected all along,” the child’s dad Daayim Fazili said waving a copy of the July 26, 2018 report.

“It holds the staff at the multi-specialty hospital liable for medical malpractice. They failed to detect fetal distress during delivery causing severe damage to Omar’s brain,” the Ajman based Indian expat said.

Financial burden

Financial costs associated with CP typically last a lifetime. However, despite the DHA report, Omar’s parents are unable to seek compensation from the hospital as they have no money to take the legal route.

“Legal compensation could have significantly eased the financial burden of raising a child with cerebral palsy. We attempted to file a compensation claim several times but couldn’t make any headway as no lawyer was willing to take up our case unless we paid upfront. There are court fees that need to be paid in advance. Then there are other expenses, such as the cost of translating documents into Arabic and opening a file in court. We don’t have this kind of money. We are running like hamsters throughout the day just to make ends meet. I cannot afford losing my job. I don’t have the privilege of being on leave to pursue this properly. We desperately need help to reach the right channels as we have zero experience on what has to be done or where to go or what to do. We seem to hit dead ends wherever we go,” said Camellia who works as marketing representative for a company in Dubai Airport Free Zone (DAFZA).

Time is of the essence

The family lose their right for compensation if they doesn’t press their claim before December.

‘Time is slipping away and so are our hopes,” said Fazili who lost his job as he couldn’t devote to work because of Omar’s condition.

“Our little big fighter weighed just 600 grams at birth and needed 12 blood transfusions. He’d put on 20 grams one day and lose 70 grams the next. For months, all my time was spent in hospital. My employer relieved me,” recalled Fazili. Omar is now two years old but he can’t sit, stand or crawl on his own. He gets epileptic seizures every few days and since he also has dystonia which causes his body to twist and jerk involuntarily even feeding him or putting him to sleep takes up to several hours. We have never had an “easy” day. Our child needs a raft of expensive therapies none of which are covered my insurance. Our life has not been the same and it never will be. Do we deserve this? Why do we have to pay for the mistake of a hospital?”

What’s Cerebral palsy?

October 6 is observed as World Cerebral Palsy Day. Cerebral palsy (CP) is the name for a group of lifelong conditions that affect movement and co-ordination, caused by a problem with the brain that occurs before, during or soon after birth.

17m

people worldwide suffer from cerebral palsy

There’s currently no cure for cerebral palsy, but treatments are available to help people with the condition be as active and independent as possible. Population-based studies from around the world report that the prevalence estimates of CP range from 1.5 to more than 4 per 1,000 live births or children of a defined age range (10–14). The overall birth prevalence of CP is approximately 2 per 1,000 live births (15–17)