Patience Crucial In Raising Child With Down's Syndrome

By Zulkiple Ibrahim One of every 800 babies born across the world has Down's Syndrome. In Malaysia, the incidence is one for every 950 births. This is the first of three articles on Down's Syndrome and the challenges faced by those with this genetic disorder, on the occasion of the World Down’s Syndrome Day on March 21. KUALA LUMPUR, March 16 (Bernama) -- In 2007, when paediatricians told Idah (not her real name) that her new-born son had Down’s Syndrome, she got herself into the right frame of mind to face the many challenges expected in children with this genetic disorder. At first, Idah's son had been diagnosed to have three heart defects apart from respiratory problems due to 'weak' lungs. "At that time, doctors told me that my son's heart was not working the way it should have. He was also prone to infections that affected his lungs and breathing," said the mother of three, who is also a civil servant. Idah's son, Azfar, was operated upon by surgeons at the National Heart Institute (IJN) when he was just three months old, to correct his heart defects. After the surgery, Idah and her son had to spend almost two years in the hospital, as the boy suffered from various health problems and complications associated with Down’s Syndrome. "During those days, I had to sleep by my son's bedside, and juggled my time between my studies and the responsibility of taking care of Azfar. During the day, I had to attend lectures and other classes while my husband and a relative looked after the boy in the ward with the help of the nurses," explained Idah who in the same year was pursuing a degree course at a local university. Idah has two other children, aged 20 and 18. FEEDING As Azfar recovered from the problems, his mother was faced by another difficulty. The boy could not feed like normal children do, and had to rely on nasogastric tubes. "He was in the hospital for a long time, right from the day he was born until the age of two. Feeding was first done through the orogastric tube and later through the nasogastric tube. Maybe he had forgotten how to swallow food as he had never swallowed food," she said. According to specialists, children with Down's Syndrome have a wide range of disabilities and feeding is one of them. They say some babies with the genetic condition are born knowing what to do while others have to be taught. "We tried almost everything to make him (Idah's son with Down’s Syndrome) able to swallow food but everything we would put in his mouth simply drooled out via the corners of his mouth. "According to doctors, his oral and swallowing muscles have low tone (strength)," says Idah, adding she even asked her friends and relatives who went to perform the pilgrimage in Makkah to pray for her child while they were in the Holy City. Finally, the boy started to swallow some liquid food on his fourth birthday. Since then, he is no longer fed through nasogastric tubes, but with a spoon and a bowl. ADJUSTING TO HAVING A CHILD WITH DOWN’S SYNDROME How does Idah adjust her life to having a child with Down's Syndrome? "It is normal to go through a painful period of adjustment upon learning that your child has special needs. "But parents can try to recognise their child's strengths as well as his limitations. The mother should educate herself about her child's condition," she said. Idah advises parents to focus on helping their child with Down's Syndrome to be the best that he can be. "The most important thing is avoid comparing the child with others. "Other aspects are to create a therapeutic and educational programme that meets the child's needs apart from seeking help for emotional issues. "Advices from, and knowledge about experiences of parents in the same boat are also helpful," she says. PATIENCE Idah said her more than four years of experience of raising her son has been an eye-opener. "The news that your baby has Down's Syndrome is frightening, but a child with Down's Syndrome will enrich your life. Lessons that I learned from my child is that such a child can make your life better. "I tell people that my son teaches me. As I am nurturing him to be the person I know he can be, he at the same time, is doing the same to me. One of the things that Idah has really learned is patience. She said, "The mood of a child with Down’s Syndrome changes several times in a short span of time. "They can also change their interests quickly. They have strong desires, so if they have their minds set on which toy they want to play with; then that is the way it has to be." Having a Down's Syndrome child teaches the parents to be patient, to be open-minded, and also the true meaning of love, said Idah. "You will also grow spiritually," she adds. The World Down Syndrome Day takes place on March 21 every year. This date (21/3) represents the three copies of chromosome 21, which is unique to people with Down's syndrome. The first World Down’s Syndrome Day was observed in Singapore in 2006. -- BERNAMA