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May 28, 2006 THE SUN-HERALD

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When loving your family breeds tragic consequences
From page 77 abhorrent but across the world it is a respected cultural practice. Globally at least, 20 per cent of people live in places where cousin-to-cousin marriage is preferred, and nearly 10 per cent of people have consanguineous parents. It is accepted in South-East Asia, Japan, Brazil and Africa, and is particularly common in the Middle East among Muslims and Christians. In Kuwait, Saudi Arabia and Pakistan, about half of all marriages are consanguineous while in Lebanon it is about 25 per cent. At Westmead’s Children’s hospital, people from 14 Middle Eastern and African nationalities attended genetic counselling. There are no figures on how widespread inter-family marriage is in Australia, but among immigrant communities in Britain and Canada the practice is even more common than in their country of origin. Researchers say the trend is the same here. Families want to continue cultural traditions, and the small pool of potential spouses makes intermarriage more likely. Traditionally, the practice has been driven by economics. Dowries were reduced, and landholdings were preserved. Spouses had similar social status, and were thus considered more compatible. In modern times, family support has remained a key factor, as well as a practical way of bringing new family members into the country. So it was for second cousins Randa and Mohammed Assoum. But when Kaled, their fourth son, was born, his severe disabilities shocked them. His birth should have brought joy. Instead there was sadness. And questions. ‘‘The doctors didn’t say it was because we were related, but they did say stop . . . no more kids,’’ Mohammed says. ‘‘We didn’t feel angry, we just accepted it. It’s our faith that makes us accept it.’’ Their intense love has also seen them through the dark days. The couple remember being sweet on each other as children and when Mohammed emigrated from Lebanon to Australia as a teenager, he knew Randa would one day join him. In Sydney, he worked long hours on construction sites to win her hand in marriage. ‘‘Since we were little, our families said, ‘She belongs to him and he belongs to her’,’’ Mohammed says. It was the same story for the couple’s siblings. Randa’s three brothers married Mohammed’s three sisters, and their homes are clustered around the Auburn area. They are successful, self-sufficient and extremely supportive. But Kaled’s disabilities have forced them to reconsider their cultural practices. ‘‘What we’re hearing from doctors and what happened to us, it’s very hard now to let our daughters and sons marry from their family,’’ Mohammed says. ‘‘I wish my sons and daughters would not marry from their family.’’ It is a viewpoint rippling across the Lebanese community. Nonetheless the subject is extremely sensitive, and families fear recrimination for a

MY FAMILY . . . Randa, left, and Mohammed Assoum, right, shed tears when their fourth son Kaled was diagnosed as disabled.

Picture: JENNY EVANS

practice that has long been completely the norm in the East, yet taboo in the West. HE ASSOUM family was alone in agreeing to tell their story openly to The Sun-Herald but those who spoke on the condition of anonymity admitted they too did not want their children to marry within the family. Lebanese-born mother-of-nine Fatima says it is a view supported by the Koran, which states that marriage outside the family helps create new friendships and bonds. But cousin marriage was common in Fatima’s family, and she felt that she and her cousin were well-suited. ‘‘But back then I wouldn’t have thought about children,’’ Fatima says. ‘‘I didn’t think of him as a cousin. I was

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‘‘No one has ever said it is because you are married to your cousin,’’ says Salima, who works in the finance industry, ‘‘but I’ve thought about it myself over the years and I’ve started to question it. I’ve learnt to live with the situation, but it’s not something I would want my children to do.’’ It is the wind of change that the medical fraternity has been praying for. The risk of defect or death in babies born to cousin couples is double that of the general population – about 6 per cent compared to 3 per cent. But de Costa’s year-long project showed significantly higher risks, perhaps due to the the smaller gene pool in Australian immigrant communities. Auburn Hospital obstetrician Greg Jenkins

‘My children are rejecting it. They feel ashamed about it so they hide it and they don’t talk about it.’
just thinking, is this a partner I can live with?’’ Fatima says that although her children are all healthy, they are ashamed of their parents’ marriage. Their grandparents would like the tradition to continue, but Fatima remains opposed. ‘‘My children are rejecting it,’’ she says. ‘‘They feel ashamed about it so they hide it and they don’t talk about it.’’ Australian-born mother-of-two Salima says she does not explain her family situation to anyone. ‘‘For us, it’s a very normal situation,’’ she says. ‘‘But it’s a very difficult topic, because in this society it is unacceptable.’’ Salima was still at university when she first met her older cousin – an engineer from Lebanon who moved to Australia to find work. The pair fell in love and later married. Their youngest son, now 14, is autistic. – who worked with de Costa on the study before she relocated to Queensland – says it is vital that families are educated about the risks, particularly those who face higher risks due to known genetic conditions or a history of intermarriage. In cases where women access high quality ultrasounds early in their pregnancy, abnormalities can be identified and couples referred to genetic counselling. They can then decide to terminate – an option allowed in the Muslim faith in the first trimester – or proceed with the pregnancy under expert medical care. But Jenkins says poor levels of awareness mean that many women book into antenatal clinics too late, and never see trained genetic counsellors or pediatric specialists.

>The risks are far greater when blood relatives marry
■ Consanguinity describes the relationship between blood relatives. Most common is marriage between first cousins. ■ Birth defects occur because blood relatives share a greater number of genes, so there is a greater chance of both parents sharing the same faulty gene. ■ Children risk inheriting two copies of the same faulty gene, and so being born with a genetic disability. ■ Parents who are not related face a 3 per cent risk of having a disabled child. For first cousins, the risk is twice as high. But, says Dr Kristine Barlow-Stewart, from the Centre for Genetics Education,
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this means the vast majority of children are born healthy. ‘‘People think they will automatically have a child with genetic problems and of course that’s not so,’’ she says. ‘‘The risk of having a [disabled] child when the parents are first cousins is around 5-6 per cent. ‘‘The problem is that where there is a tradition for relatives to marry, you’ll get the grandparents who are first cousins, the parents who are first cousins and the children who are first cousins. Then the chance of them sharing the same faulty gene is compounded and there risk is much greater than the 5 to 6 per cent risk.’’ See www.genetics.com.au.

ET EVEN women with the best medical care have stories that are heartbreaking. Jenkins tells of one woman who learnt at 19 weeks that her baby had a lethal brain abnormality. She decided to carry the child. ‘‘From her perspective, it was the will of God,’’ Jenkins says. ‘‘It broke her heart, but the way she approached it was that she would do the best she could because it was something over which she had no control. ‘‘It was a very painful experience . . . a very challenging and confronting situation. My staff kept wanting to send her away for more tests and I said, ‘No, that’s not what she wants’.’’ In the end, the woman’s baby died an hour after birth. ‘‘[But] she got to meet her baby and she got to comfort it,’’ Jenkins says. ‘‘She didn’t have to make the decision to terminate the life of her child. Her next baby was fine and it brought great joy to everyone involved.’’ At the Children’s Hospital at Westmead, geneticist Professor David Sillence believes

consanguinity may have outlived its usefulness. ‘‘When you make the transition from Lebanon to Australia, the bank is on George Street in Parramatta – it’s no longer money which the family holds in it own pocket,’’ Sillence says. ‘‘Consanguinity doesn’t necessarily preserve marriages any more and it doesn’t necessarily protect women from abuse within the family. It puts women in a relationship within their household where they not only have a husband but a father-in-law who is related to them because he is the uncle and there is increased pressure on them. ‘‘There is a dysgenic [relating to or causing degeneration in the type of offspring produced] effect that’s been shown in repeated studies.’’ One of those is reproductive loss, Sillence says. He has devoted his career to untangling the complicated family tree of Sydney’s Middle Eastern community. He tells the story of a Pakistani woman who had five pregnancies, all ending in miscarriage at 16 to 18 weeks. But he was surprised by the depth of grief in the community, particularly among men. ‘‘I was not prepared for Mediterranean males who sit and cry for one hour about their sadness,’’ he says. Dozens of men spoke to Sillence during a study at Westmead in the late 1990s. He hoped his research would lead to a funding grant to help establish a data bank of rare disorders, and improve screening and testing options. But September 11 put paid to that. The research funding dried up and the community closed up. Politicians became disinterested in health. Sillence hopes his research will gain momentum again. In the meantime, he mops up the tears and discourages interfamily marriage, except in cases where love is involved. This is because only love can overcome the vast grief. ‘‘You cannot know how much grief there is until you do a study like this,’’ he says. ‘‘Your only research cost is Kleenex tissues. Grief can be like a well and that well is very deep for these families. ‘‘It’s grief heaped upon grief . . . the personal grief of a miscarriage, heaped upon the grief of a community, heaped upon grief in an international context.’’ For Randa and Mohammed Assoum, love has kept them together. And as they sit side by side in the lounge room of their Lidcombe home, their connection is obvious. They giggle, and smile at each other, recounting their courtship. ‘‘I loved him,’’ Randa says shyly. ‘‘We’re still in love and we’ll never stop loving each other,’’ Mohammed says. ‘‘Not everyone has that. We’re just lucky, thank God. And we love our children very much.’’
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