March 21st is officially observed as World Syndrome Day by the United Nations. Globally, a variety of activities and events are organized to raise public awareness about the syndrome. Parents of children with Down syndrome often struggle to find the right support and advice regarding their child's condition. The right information and support can help parents raise their child in a healthy environment that will encourage them to flourish.
Down syndrome is a condition that occurs when a baby is born with an extra chromosome. Chromosomes are small packages of genes in the body that determine the baby’s growth and how the baby’s body will function as it grows during pregnancy and after birth. A normal baby has 46chromosomes but babies with Down syndrome have an extra copy of one of these chromosomes. The extra copy of the chromosome changes the way the brain and body develops.
Down syndrome can affect a person’s cognitive ability and physical growth. It can result in mild to moderate developmental issues and present a higher risk of some health problems such as Alzheimer’sdisease, epilepsy, hearing impairment, sleep apnea, leukaemia, ear infection, eye diseases and heart defects from birth.
Down syndrome’s presentation can vary widely from child to child. The medical and physical concerns, for some children, might be different and they might need a lot of attention while others are able to lead healthy lives.
The syndrome is genetic and cannot be prevented, however, it can be detected while the baby is still in the womb. A genetic counsellor can help individuals assess their chances of having a child with Down Syndrome. Health problems associated with the syndrome are treatable and most can be managed through early interventions.
Children with Down syndrome usually grow at a slower rate and reach developmental milestones late as compared to their peers. Older children may experience delays in speech and self-care skills like feeding, dressing and toilet training. They also have certain physical features such as a flat face, an upward slant to the eyes, a short neck, small ears, sticking out of the tongue, and small hands and feet etc.
Down syndrome affects can affect a child’s learning ability in different ways. Children with the syndrome are able to learn but at a much slower pace. This also results in them reaching their goals a little later than normal.
Down syndrome can be detected during pregnancy, through prenatal tests or diagnosed after birth through tests and clinical evaluation. Following are some risk factors of the syndrome:
If any of these risk factors are available then there are high chances that the baby will develop the syndrome.
Parents who have a child with Down syndrome should educate themselves about the disease as much as possible to be able to provide optimal care to their child. Parents are also encouraged to join informational sessions and classes to educate themselves about the syndrome to better raise their child. Experts recommend enrolling kids with Down syndrome in early-intervention services as soon as possible. These include physical, occupational and speech therapies under the supervision of qualified professionals who work closely with the child to encourage and accelerate development.
Parents, with the help of doctors and specialists, should encourage their children to go to regular schools to enjoy participating with their peers in all kinds of school activities, physical fitness and extracurricular programs. However, some children with Down syndrome have needs that are best met in a specialized program.
Down syndrome is a lifelong condition. However, itis manageable and with some help, such children can lead full productive lives as well. Although there is no cure to the disease, there exists a wide variety of treatments and therapies to address a child with Down syndrome’s unique medical issues and developmental profile. Parents who are aware about their child's symptoms should provide early-intervention services to their children to improve their physical and intellectual abilities. They also need extra help and attention in school because of their slow development and growth process.
A variety of therapies such as occupational, physical, speech and behavioural therapies have shown to have a significant positive impact on children’s learning and development. Further developmental and physical therapies include specialized education services, social and recreational activities and programs that offer job training and teach self-care skills.
In addition, parents are encouraged to work closely with their child’s doctor and teacher to watch for and manage any health problems associated with the condition.
Being a parent of a child with Down syndrome is challenging, regardless of the capabilities of the child and parents often feel overwhelmed. However, there are numerous support groups, organisations and official platforms where parents can turn to for help. There are numerous scientific breakthroughs that can help children with Down Syndrome lead a healthy, productive and normal life.
Despite of all the challenges faced by children with Down syndrome, they can go to regular schools, make friends, enjoy life and get jobs. If their condition is diagnosed early and they are given special help, they can live a healthy, happy and independent life.
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