Only 294 Down Syndrome children receive CDC care
BANDAR SERI BEGAWAN
HEALTHCARE professionals from the Child Care Centre (CDC) are urging all parents of children born with Down Syndrome to register at the Centre.
Although there is no increase in the cases of children born with Down Syndrome in Brunei, only 294 children are registered at the CDC.
CDC specialists yesterday said that there could be more children with the genetic syndrome whose parents chose not to have them registered at the Centre, and as a result, could expose them to various health risks.
“Children with Down Syndrome often have additional healthcare needs, although the pattern is variable. They often have a higher rate of heart disease and abnormalities, bowel abnormalities, hearing and vision problems, blood disorders and cervical spine dislocation,” said one of the child development specialists at the Centre who did not wish to be named.
The specialist went on to say that about half of the children born with Down Syndrome suffer from heart diseases which may be trivial or severe.
Out of the total registered at CDC, 158 are boys and 136 are girls.
In a separate interview, Hjh Siti Zaliha Hj Abu Salim, the president of the Down Syndrome Association or also known as “Ability Built Through Learning and Experience” (ABLE), said that while there has been an increase in parental involvement, there are still parents who choose to keep their children away from public in order to ‘protect’ them.
“We want to create an environment where these individuals and their respective families can come together and connect,” she said.
Meanwhile, ABLE’s Deputy Secretary Hjh Liza Jasmin Hj Brahim said that some parents chose not to register their children at the CDC as they have limited understanding of the benefits their children could gain from the programmes provided at the Centre.
She pointed that the CDC provides its members various therapies and clinical appointments which are part of the early intervention programme.
“New parents, especially the mothers tend to go through an emotional rollercoaster when they learn that their newborn child has Down Syndrome. Therefore, the feeling of “protecting” their child comes naturally.
“To help manage this emotional stage, it is vital they they have a degree of knowledge and awareness and that they have good support from those around them,” explained Hjh Liza.
However, she said it is vital for parents of children with Down Syndromme to be aware that their children require extra stimulation through the early intervention programme to reduce the developmental gap between a child with Down Syndrome and a normal child.
Hjh Liza, whose child is also born with Down Syndrome, expressed her disappointment with the general public who sees the individuals with the genetic condition as handicapped and incapable of doing anything.
“Individuals with Down Syndrome should be seen as individuals with different abilities and not disabilities. Any person is born with strengths and weaknesses and humans generally have abilities that differ from one another.”
Hjh Liza added that the most common misconceptions often thought by people is that individuals with Down Syndrome do not have the potential to contribute to the society.
She added that individuals with Down Syndrome develop slower than normal people.
The Brunei Times