New Delhi: Parents of children born with Down Syndrome often struggle to cope with the baffling new realities of their lives and among the biggest challenges they have to overcome is acceptance.
Hollywood animator Jesh Krishna Murthy said he found himself all at sea after being told his now five year old son was born with a two centimeter hole in the heart and Down Syndrome.
"This was something I was not prepared for, something I was not ready for and something that hit me so hard that I did not know how to pick up and move on with life," Murthy said.
Noted for his work in films such as "Twilight: New Moon" and "Harry Potter: Deathly Hallows," Murthy recounted his experiences at an interactive session organised by the Shift Series here recently.
Down syndrome, in medical terms, is a chromosomal disorder caused by an error in cell division that results in an extra twenty first chromosome. The condition often leads to intellectual impairment and physical abnormalities including short stature and a broad facial profile.
"Although the diagnosis of Down syndrome is mainly clinical, the gold standard remains the blood test chromosomal analysis that shows an extra copy of chromosome 21," according to a World Health Organisation spokesperson.
"I knew something was wrong, something was not right," Murthy recalled being called into the labour room, five years ago and being told by the paediatrician that his son had a genetic disorder.
"That's when a thousand pound truck just went through me, just ripped through my guts and I didn't know what to do," he said.
According to the WHO, a child with Down Syndrome can have several medical problems and internal defects, some of which manifest after a few years. Such children need a long term support several for life?long.
Hence acceptance, says the world body, is certainly one of the biggest challenges that parents must overcome in order to facilitate proper development and progress of a child with Down Syndrome.
"I think nobody in life can anticipate something like this and I was at a complete loss as to how I was going to live with a special needs child and what people were going to say started to matter," Murthy said.
He said he mustered up courage to intimate his wife about their son's condition only after three months of the birth and eventually acceptance came after "a week full of tears and intense pain,"
"Acceptance made way for a willingness to learn more about the problem and find a solution," Murthy said.
One case of Down Syndrome is reported among every 1000 live births in India while in the western countries, this figure is one against 800 live births.
"Owing to the rarity of its occurrence, often medical help is discouraging," Murthy said.
In such situations, fellow parents more than often, offer a silver lining, he says adding that joining parent support groups helps developing a supportive emotional climate and encourage open communication.
Presently, the country's national programme ? RBSK (Rashtriya Bal Swasthya Karyakram) includes services for early diagnosis and management of children with Down Syndrome. The cost of the treatment does not have a standard estimate since each individual with Down Syndrome is different and has different needs of treatment according to the WHO.
"Prenatal tests during pregnancy in high risk women can confirm Down Syndrome and provide an option for termination of pregnancy, besides also indicate the probable chance of the next baby also having the disorder. Such tests are available in big cities," a WHO spokesperson said.
"I would call up parents in the US, parents in UK, in Australia and Africa because I needed to know what they were doing for their kids, because doctors here were not helping," Murthy said.
"What really worked for us was intensely studying it, intensely working with the child everyday, making sure that we learnt about the therapies and everything else so that he could make the best of that he could," he says, adding, "And we have come to a point today where we are a very happy family."
