In a world where perfection alone gets constantly celebrated, they may not exactly fit in.
On Friday, World Down Syndrome Day, a group of parents who had gathered with their Down’s syndrome-affected babies at SAT Hospital spoke about the ways in which their not-so-perfect children were lighting up their lives.
“Down’s syndrome is not a disease; it is just a genetic condition wherein they have an extra copy of the 21st chromosome. They are friendly, happy children, who want to be loved and pampered, and it is up to us to bring them up like normal children, in the midst of society. They may have some health issues and mild to moderate mental retardation,” says V.H. Shanker, who heads the Genetics clinic at SAT Hospital, which had organised the get-together of parents and children registered at the clinic.
They may not become doctors or engineers but with proper training and by affording them sufficient opportunities for interpersonal interaction and social living, these children can grow up to be achievers in different fields, doctors said.
The day was an occasion for the parents to air their concerns about bringing up their children, who may have some chronic health issues throughout their lives.
The message to doctors on World Down Syndrome Day was to improve their awareness of Down’s syndrome, which is one of the commonest chromosomal anomalies, so that the health issues faced by the Down babies – cardiac issues, vision and speech impairments or hypothyroidism can be treated appropriately.
Many couples are concerned that any more children they decide to have may also be afflicted by Down’s. But doctors told the families on Friday that there was only a one per cent chance of their next child being born with Down’s syndrome and that there were pre-natal diagnostic tests they could opt for just to be sure.
SAT Hospital had organised the support group of parents of Down babies some four years ago, to help them cope with the issues of social stigma and isolation that they may face.
“Over the years, I have seen the social stigma about Down babies vanishing among the parents here, which is a very positive development. Parents today are more aware that they should never exclude or isolate these children and that the more social exposure and emotional support they get, the better adjusted they become,” Dr. Shanker says.
Parents of children with Down’s syndrome got together at SAT Hospital on Friday, World Down Syndrome Day.