Treating a Common But Misunderstood Disability
By | March 4, 2014

Born with cerebral palsy, 5-year-old Chhen Sivong has trouble walking, standing and raising his arms, but he also struggles with an even more fundamental motor skill: swallowing.

Around the time he turned one, the little boy began having problems eating solid food, which upset both Sivong and his family.

“We noticed he had difficulty eating and swallowing when he turned 1 year old,” said his aunt, Prum Nan, 27, who cares for Sivong when his parents are at work. “He mostly cried when he started to eat or swallow.”

Theirs is a surprisingly common story across the country. In September, the NGO Capacity Building of People with Disability in the Community Organization (Cabdico) released a research paper estimating that communication and swallowing disorders affect 536,000 people in Cambodia. But even though these disorders occur frequently, it is hard for sufferers to find proper treatment.

According to Cabdico, swallowing and feeding problems—known medically as dysphagia—can also affect up to 70 percent of children with disabilities. They can also make people who suffer from them 13 times more likely to die prematurely if left untreated.

“This is because they are at risk of aspirating—this is when food or liquid enters the lungs—and hence contracting pneumonia,” said Weh Yeoh, a consultant with Cabdico.

Mr. Yeoh said that swallowing problems occur most commonly in children with cerebral palsy, which itself is the most common disability among children.

Dysphagia—which is usually treated by speech therapists who are specialists in swallowing disorders—can also occur in children or adults with Down’s syndrome, autism, cleft lip, cleft palate and other muscular disabilities.

From their home in Siem Reap province’s Sotr Nikum district, Ms. Nan said, Sivong’s family had no idea how to help him, other than feeding him only soft foods such as rice porridge and mashed fruit.

But their plight and that of other families is now being addressed.

At the Chey Chumneas Referral Hospital in Takhmau City last week, a small group of people took part in swallowing and feeding therapy, with the help of two plates laden with chips, cookies and small pots of jelly.

Each of the 10 trainees at the four-day workshop held by Cabdico will be sent to communities across the country to help families like Sivong’s, teaching them how to train the muscles used for swallowing, and how disabled children and adults can position themselves while eating to make swallowing easier.

“The wider objective of this program is to develop speech therapy within the country,” Mr. Yeoh said.

“Despite the enormous need for these potentially life-saving services, currently, there are no Cambodian university-trained speech therapists.”

Using his experience training in speech therapy with Singaporean experts, Dr. Hong Chea, a program manager in charge of the developmental disability service program with the Cambodian Center for Adolescent Mental Health, taught the workshop attendees how to identify a feeding problem and why safe feeding and swallowing is critical. There are cases, Dr. Chea said, in which families who don’t understand the seriousness of the problem try and force their child to eat.

“For children with disabilities like autism, Down syndrome and cerebral palsy, most of them have a problem with muscle development,” he said.

Some children with swallowing issues struggle to put on weight because they refuse to allow food to be put in their mouths, leading to malnourishment. The most important thing a family can learn is how to safely feed their child, he said, and this includes not only what foods are appropriate, but also what position the child should be in when feeding, he said.

Chea Phearom, who has been a community rehabilitation officer with Cabdico since 2006, was one of the trainees at last week’s workshop.

“I’ve been working with children with disabilities for a long time and most of them have problems with feeding and swallowing,” she said.

“Some families who have children with cerebral palsy or Down’s syndrome, for instance, do not have enough of the right kinds of food to support the children. In these communities, some parents don’t have the knowledge to prevent the children from having problems, sometimes with their lungs, so they will die,” Ms. Phearom said.

“[Now], we can help families understand and know how to help. They will change their behavior.”

In Siem Reap, Sivong’s aunt is relieved that the family will learn new skills in how to take care of him.

“We don’t understand these kind of swallowing and eating problems,” she said.

“I sometimes ask myself what sort of bad karma he got in a previous life that has resulted in him not being able to walk or eat properly.”

(Additional reporting by Kuch Naren)

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