THE SUN-HERALD May 28, 2006

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> Hugh Mackay

The ethics of mining media gold
PAGE 79

Picture: JENNY EVANS

The family ties that bind
SMILE twists across Kaled Assoum’s face. Lying in his cot, he gurgles happily as his mother, Randa, tickles his belly and kisses him on the face. The eight-year-old, pictured above with his grandmother, was born with severe intellectual and physical disabilities. He cannot walk or talk, and feeds through a tube in his stomach. He has the mental capacity of a one-year-old. ‘‘I still love him day after day,’’ his father Mohammed says. ‘‘From the beginning I was a bit sad and she was a bit sad. She started crying but I said in the end we can’t do anything. That’s how God created him. Even if we cry from now on until 100 years, you can’t do anything.’’ It is almost two decades since doctors at Sydney’s Auburn Hospital began to research a devastating pattern of birth defects among babies born to Lebanese families. Led by pioneering obstetrician Dr Caroline de Costa, the study showed significant increases in

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Within Sydney’s Middle Eastern community interfamily marriage seems to be on the rise and it is leading to a high incidence of children born with defects. Erin O’Dwyer explores the devastating cost of a tradition that many in the West regard as taboo.
birth defects, stillbirths and miscarriages among women who were married to blood relatives, particularly first and second cousins from families who came largely, but not exclusively, from the Middle East. The study found that one in three Lebanese women were married to a cousin and, across the hospital’s maternity ward, one in 10 women had married a cousin. Even more alarming was the finding that babies born to these women were four times more likely to be stillborn and eight times more likely to suffer serious birth defects. Ten years later, maternity ward staff reported these marriages were on the rise. De Costa followed up her landmark study, interviewing every pregnant women who booked into the hospital’s maternity ward in one year. In 2001 she published her results, revealing that almost 20 per cent of women were consanguineously married. Of those, more than half were married to first cousins and almost 60 per cent were born in Australia.

Fifteen babies born to consanguineous couples – related by birth – at Auburn Hospital had severe defects, including heart, kidney and liver function problems. Among non-cousin couples there were five disabled babies – one with a cleft lip and two with club feet. Of those babies that died – six in total – all were born to consanguineous couples. ‘‘What was interesting,’’ de Costa wrote at the time, ‘‘was that the proportion of pregnant women who were consanguineously married had risen from 11 per cent in the 1980s to 19.6 per cent in 1999. ‘‘In other words . . . consanguineous marriage is continuing to be commonly practised by the next generation. Accurate information about risks and non-judgemental genetic counselling need to be available.’’ For most in the West, consanguinity is Continued page 80

> Flying high Why the Aussie flag is back in favour PAGE 81 > Curtain call Kevin Spacey’s London drama PAGE 84 > Sarah Dunant The books that changed me PAGE 87
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