DOWN SYNDROME why support IS CRUCIAL

Three mothers share how their introduction to Down syndrome was eased by connections with others.

Most people know the term “Down syndrome”, but if your child were diagnosed with it, would you really know what it is? And more importantly, would you know what to expect from the future?

IN A NUTSHELL

Down syndrome is the most common chromosomal disorder in newborns in the world. In South Africa, up to two babies per every thousand born have Down syndrome. It occurs when a baby is born with an extra, full or partial, copy of chromosome 21 in their DNA. It leads to intellectual delay or disability, as well as heart problems and gastrointestinal problems in many children. Physical signs can be upward slanting eyes, small ears, protruding tongue, short stature, flattened face, short neck, small hands with a single crease in the palm, and tiny white spots in the iris of the eye.

But of course, Down syndrome is both much more and much less than that. Much more of a learning curve, but in the end, much less devastating than you might expect – and the process is eased by contact with others who’ve walked the same road.

Ancella Ramjas is the national executive director of Down Syndrome South Africa. She explains that parent support groups are run by Down Syndrome South Africa’s association members as part of their services. “These support groups are very important,” she says, ”as they present parents with a platform to meet other parents. Their children with Down syndrome receive early intervention programmes – such as physiotherapy, occupational and speech therapy – that assist with their developmental milestones. They are also assisted with applying for a SASSA grant, and various topics are discussed in terms of how to raise their children, from potty training to behavioural challenges, access to early development centres and schools.” We spoke to three mothers who did not know what Down syndrome was until they had babies with the condition. All emphasised how important it was to have a connection to other parents going through similar processes of shock, learning and acceptance as they are. The takeaway message is, if you receive a diagnosis, either before or after your baby’s birth – reach out. It can and will change your life.