ABU DHABI // The mother of a little boy with Down syndrome is working to raise care standards in her native Sri Lanka to match those in Abu Dhabi.
Chandani Desilva was home on holiday in 2011 when she realised just how lucky she was that her son Joshua had been born in a country with access to specialist medical care.
During the holiday, Joshua, now aged 5, suffered severe respiratory problems and needed emergency treatment.
After being turned away from one hospital, he was finally seen by doctors at a second one.
Ms Desilva found the services for special-needs children in Sri Lanka inadequate in comparison with Abu Dhabi. There was also a stigma attached, she said.
“The difference was dramatic and they were just not equipped to deal with special-needs children in the same way,” said the 47-year-old. “I realised how hard this must be for families in the same situation.’’
She then asked Sri Lankan doctors what they needed. “The feedback I got was that they needed more training, more coaching.”
Returning to Abu Dhabi, Ms Desilva approached her son’s specialist, Dr Eeva Liisa Langille, with the idea of an educational workshop for doctors, therapists and parents.
After coordinating with the Sri Lanka Medical Association, the first workshop was held last year.
Dr Langille, the paediatric medical director at Cambridge Medical and Rehabilitation Centre in Abu Dhabi, organised a second two-day workshop last month. A team from the centre travelled to Sri Lanka to advise healthcare professionals and teachers who work with special-needs children. The workshop will now take place every year.
Discovering her son had Down syndrome was one of the worst moments of Ms Desilva’s life, and she is eternally grateful that Joshua, her third child, has access to specialist treatment in Abu Dhabi.
She was three months into her pregnancy when a routine scan indicated that her unborn son had abnormalities.
“The doctors were very frank and open with me,” said Ms Desilva, who works for Abu Dhabi Commercial Bank and has lived in the UAE for 19 years.
“I did not know the child was Down syndrome at that point. Only that there were abnormalities. I was shocked and devastated.”
Joshua was born premature, at seven and a half months, and doctors confirmed he had Down syndrome. A diagnosis after birth is based initially on physical signs such as a short neck, flattened facial profile and nose and a small head, ears and mouth.
His condition meant he was in and out of hospital during his early years, with respiratory problems, wheezing and bouts of pneumonia. Thankfully, said Ms Desilva, his treatment was covered by insurance.
While the treatment he received was second to none, Ms Desilva praised the valuable educational advice she received on how to cope with a Down syndrome child and follow-up care.
“I had a lot of questions for the doctors,” she said. “I felt they were very open to explain and there was a lot of treatment available. At the right age they told me to get rid of his tonsils because this is one of the ways they can get sick.”
Doctors also performed corrective surgery on Joshua’s ears and physiotherapists helped him to walk after his condition affected his ability to stand and move.
While he is a few years behind other five-year-olds when it comes to reading and writing, in other ways – such as his methodical approach to tasks – Joshua is years ahead.
Ms Desilva’s ultimate goal is for every government hospital in Sri Lanka to offer free special-needs assessments and have the necessary procedures in place to give children the treatment they deserve.
“I feel I am blessed in this country,” she said.
“I know I cannot take Abu Dhabi to Sri Lanka, but we can help share the blessings we have received here and do everything we can to offer support in Sri Lanka.”
jbell@thenational.ae