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22 Dec, 2008 06:55

Mothers refuse to give up Downs’ syndrome children

All pregnant Russian women now have access to pre-natal screening to determine whether their child is suffering disabilities such as Down's syndrome. But very often the tests prove to be woefully inaccurate.

Natalya Rigina looks after eight children. Three of them are her own. She learnt about the high risk of having a child with Down's syndrome during her last pregnancy three years ago. But it did not discourage her.

“I wasn't even thinking about having an abortion. I'm not a religious person, I just think they are people like everyone else. I couldn't kill my child,” Natalya, from the 'Downside Up' Support Centre said.

But screening is not an exact science, and is only about 60 per cent accurate. While it can help some parents make a choice, for others the results may turn out to be tragically misleading.

Alla Shakina had a perfect pregnancy. But then came the birth of her long-awaited first child.

“My screening results were perfect. When I suggested doing an invasive, more serious test, doctors told me there was no need, as there was no risk specified. Then… there came a surprise,” Alla Shakina.

While in hospital, Alla panicked and wanted to give the baby away to an orphanage. She says it took her two weeks of frantic research to learn that she could actually cope with bringing up a child with Down’s syndrome.

“They said about my child: just leave her behind, she's just a vegetable. You will only ever see her sleep and eat, why do you need such a child? It's good I did not listen to them,” Alla Shakina.

Very often it's the lack of knowledge and guidance that scares mothers most. The Moscow-based ‘Downside Up’ support centre is on hand to help thousands of parents.

“We help them not to regard it as a disaster. During the Soviet times and even into the new Russia society was prone to segregating people with the disability rather than encourage their integration. Now the attitudes are changing,” said Natalya Rigina from ‘Downside Up’.

The charity says most children born in Russia with the condition are given up at birth but that, in Moscow, almost half now return home with their parents.

One of the goals of the centre is to reduce the number of orphans among those suffering from Down’s syndrome.

Almost all parents at the centre admit to a moment of despair at their child's birth. But with the hard work came hope. And their goal is to give their children a normal life, no matter what the diagnosis.