Abu Dhabi: As she lies in the children’s ward watching cartoons, comforted by her mother by her bedside, six-year-old Bedour Mohammad Al Ali seems unfazed by the many tubes connected to her little body that help her eat, drink and breathe.
Bedour was born with severe epilepsy and has suffered brain damage from her seizures. She also has a rare reflux disease, which means she cannot swallow and when she does, it will come back up. If she is fed in the wrong position, food can get into her lungs.
Bedour has also had a tracheostomy and now has an oxygen tube that assists her with breathing.
Being in and out of hospitals did not help Bedour’s weak immune system and resulted in her having to spend time in the ICU on every occasion she fell ill.
After five years of fighting for her life, it was finally recommended that the best care for Bedour was at the Cambridge Medical and Rehabilitation Center (CMRC) in Al Ain. A year on, her mother and doctors say she is making progress thanks to the specialised care.
Her mother recalls the stress she felt every time she had to take Bedour to a hospital due to their lack of understanding about her daughter’s special requirements.
“If she were in a normal hospital for three days, I would be with her, awake for three days. Because even if a small thing is not done right, it can be dangerous for her,” she said.
Her anxious mother is desperately trying to find out if her daughter’s case qualifies them to be exempt from paying the 20 per cent charges that apply to patients receiving treatment in a private facility.
“They told us we will have to pay around Dh12,000 per month, every month. We can’t afford it,” she said.
The prospect of Bedour at home is a worrisome thought even for her doctors at CMRC, although they also agree that hospital is not the right place for her. “If she would be forced to go home, I am pretty sure that she would deteriorate,” said Bedour’s doctor, Eeva-Liisa Langille, Medical Director of Paediatrics, CMRC.
“No matter how well-intentioned the family [for delivering home care], for some patients, the care is so specialised and needs such precision that it can only happen in an institution which has the skilled personnel for it,” said Dr Langille.
For now, Bedour’s family has no choice but to wait for the health authorities’ decision to whether they will be exempted from paying the 20 per cent charges.
The paediatric wards in CMRC’s Abu Dhabi and Al Ain branches are filled with similar stories of worried parents who are unsure of what the future hold for them and their children.
CMRC confirmed that the average monthly co-payment for their patients based on their level of clinical care could range from Dh20,000 to Dh50,000 per month.
