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A nation without Down syndrome?
C HARLOTTE Roach is five years old. A little blonde bundle of energy wrestling on the couch with her older sister Alyssa one minute, sitting with brother Bailey in rapt attention in front of the TV the next. Your regular five-year-old then. With one difference. Charlotte has Down syndrome.
There are an estimated 1000 South Australians with the condition, and around 15-20 babies born with it each year in the state.
But an important ethical question is brewing about the way Western societies deal with Down syndrome, a condition marked by an extra chromosome, some distinctive physical features and a variable level of intellectual disability. It is predicted that soon in some countries, such as Denmark, there will be no more children born with the condition as the accuracy of prenatal testing and the rate of terminations increase.
In Charlotte’s case, the first sign she may have had the syndrome was discovered at a regulation 20-week scan. At that stage it was just one of a number of possible abnormalities. Mother Samantha and father Daniel were sent to a see a specialist paediatrician to talk about their options.
The scan was on a Wednesday but it was not until the following Monday they could see the specialist. “You try not to Google everything but you can’t help yourself,” Samantha says. “It was a long weekend.”
Samantha is grateful the paediatrician was neutral, not pushing them one way or the other. That is not always the case. Another specialist they say “read from a textbook from the ’60s” and gave outdated information.
But after that first meeting, Samantha and Daniel decided not to have any more tests done and to continue with the pregnancy.
“She instantly respected our decision when we said we weren’t interested in termination and moved straight on,” Daniel says.
But at 28 weeks, Charlotte needed fluid drained from her lungs in utero and while the procedure was taking place, Samantha also had an amniocentesis – in which a needle extracts fluid from the amniotic sac surrounding the foetus – to check the prospect of Down syndrome.
“We always had it in our heads,” Samantha says. “Being told, even though you have it in your head that it’s a possibility, when you are told it’s like being hit by a bus.”
But there were no regrets either.
“By that stage we were looking forward to meeting her and certainly didn’t want to terminate – particularly at that late stage,” Daniel says.
Down syndrome was first described by a British doctor in 1866 and affects six million people worldwide. But there have been significant advances in recent decades with life expectancy more than doubling, with many getting married, holding jobs and enjoying full lives.
Research has found these people, who are born with an extra 21st chromosome, to be among the most satisfied in society with their lives and looks, bringing joy to family and friends.
But crusaders such as biologist Richard Dawkins claim it is “immoral” to bring such children into the world if scientific advances offer choice. “Abort it and try again,” he told one woman struggling with the issue.
Other academics have even raised the shocking spectre of terminating babies with Down syndrome after birth, arguing they might be happy individuals but are an “unbearable burden” on families and state resources.
Daniel Roach is disgusted with the “eugenics” world view propounded by people such as Dawkins.
“What is says to me is that they are not even worth being born and that is a very hard line approach,” he says. “That sort of theory has been popular in the past. Look at Nazi Germany and where that got us.”
And, he says, if you start with Down syndrome where do you end?
“There is a whole bunch of complications that can occur after birth or during birth that can be far worse,” he says.
“It’s like saying, ‘you suffered this brain injury, well we could have terminated you at birth, why don’t we just euthanase you now?’ How far do we want to go?”
Daniel and Samantha limited the news about Charlotte to only a few close family and friends. They didn’t want Charlotte to be only defined by her Down syndrome.
“If people were labelling her before they ever met her, that is all the would ever see,” Samantha says.
It’s that labelling that most bothers Charlotte’s parents. The myths and the stigmas that surround the condition are mostly based on an old-fashioned perspective of what people with Down syndrome are capable of accomplishing.
“It’s easy to pick because of facial characteristics so people think they know about it in society,” Samantha says. “I think that’s why it’s targeted.”
“I think the biggest issue is because they have a diagnosis it’s really easy to pigeonhole them,” says Daniel. “The more we have been involved in the (Down syndrome) community the more you realise you can’t pigeonhole.”
Ellen Skladzien is the chief executive of Down Syndrome Australia and says one of the biggest problems facing parents of children who may have the condition is the lack of knowledge, not just in the community but in the medical fraternity.
“What we have is doctors telling families their child will have a lifetime of suffering or they will never go to school or it will be devastating for their marriage,” she says. “We know all these things are untrue.”
In the 1970s the average life expectancy for someone with Down syndrome was around 25. Now people are living into their 60s and 70s. The role of Down Syndrome Australia is to better inform doctors and to bring together families affected by Down syndrome to help each other and share knowledge.
Charlotte Roach has been to mainstream child care, mainstream kindy, mainstream dance classes and will start mainstream school later this year.
The number of babies born with Down syndrome is hard to pin down in Australia. There is no national register. But there is evidence elsewhere in the world that the birth of a Down syndrome child is increasingly rare.