80 May 28, 2006 THE SUN-HERALD

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EXTRA>

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 MY FAMILY . . . Randa, left, and Mohammed Assoum, right, shed tears when their fourth son Kaled was diagnosed as disabled. Picture: JENNY EVANS
economics. Dowries were reduced, and
landholdings were preserved. Spouses had practice that has long been completely the norm ‘‘No one has ever said it is because you are consanguinity may have outlived its usefulness.
similar social status, and were thus considered in the East, yet taboo in the West. married to your cousin,’’ says Salima, who ‘‘When you make the transition from
more compatible. In modern times, family works in the finance industry, ‘‘but I’ve thought Lebanon to Australia, the bank is on George

T
support has remained a key factor, as well as HE ASSOUM family was alone in agreeing about it myself over the years and I’ve started Street in Parramatta – it’s no longer money
a practical way of bringing new family to tell their story openly to The Sun-Herald to question it. I’ve learnt to live with the which the family holds in it own pocket,’’
members into the country. but those who spoke on the condition of situation, but it’s not something I would want Sillence says.
So it was for second cousins Randa and anonymity admitted they too did not want their my children to do.’’ ‘‘Consanguinity doesn’t necessarily preserve
Mohammed Assoum. But when Kaled, their children to marry within the family. It is the wind of change that the medical marriages any more and it doesn’t necessarily
fourth son, was born, his severe disabilities Lebanese-born mother-of-nine Fatima says it fraternity has been praying for. protect women from abuse within the family.
shocked them. His birth should have brought is a view supported by the Koran, which states The risk of defect or death in babies born It puts women in a relationship within their
joy. Instead there was sadness. And questions. that marriage outside the family helps create to cousin couples is double that of the general household where they not only have a husband
‘‘The doctors didn’t say it was because we were new friendships and bonds. population – about 6 per cent compared to but a father-in-law who is related to them
related, but they did say stop . . . no more kids,’’ But cousin marriage was common in 3 per cent. But de Costa’s year-long project because he is the uncle and there is increased
Mohammed says. ‘‘We didn’t feel angry, we just Fatima’s family, and she felt that she and her showed significantly higher risks, perhaps due pressure on them.
accepted it. It’s our faith that makes us accept it.’’ cousin were well-suited. ‘‘But back then I to the the smaller gene pool in Australian ‘‘There is a dysgenic [relating to or causing
Their intense love has also seen them wouldn’t have thought about children,’’ Fatima immigrant communities. degeneration in the type of offspring
through the dark days. The couple remember says. ‘‘I didn’t think of him as a cousin. I was Auburn Hospital obstetrician Greg Jenkins produced] effect that’s been shown in
being sweet on each other as children and repeated studies.’’ One of those is
when Mohammed emigrated from Lebanon
to Australia as a teenager, he knew Randa
‘My children are rejecting it. They feel ashamed about reproductive loss, Sillence says.
He has devoted his career to untangling the
would one day join him. In Sydney, he worked
long hours on construction sites to win her
it so they hide it and they don’t talk about it.’ complicated family tree of Sydney’s Middle
Eastern community. He tells the story of a
hand in marriage. Pakistani woman who had five pregnancies,
‘‘Since we were little, our families said, ‘She just thinking, is this a partner I can live with?’’ – who worked with de Costa on the study before all ending in miscarriage at 16 to 18 weeks.
belongs to him and he belongs to her’,’’ Fatima says that although her children are all she relocated to Queensland – says it is vital that But he was surprised by the depth of grief
Mohammed says. healthy, they are ashamed of their parents’ families are educated about the risks, particularly in the community, particularly among men.
It was the same story for the couple’s siblings. marriage. Their grandparents would like the those who face higher risks due to known genetic ‘‘I was not prepared for Mediterranean males
Randa’s three brothers married Mohammed’s tradition to continue, but Fatima remains conditions or a history of intermarriage. who sit and cry for one hour about their
three sisters, and their homes are clustered opposed. ‘‘My children are rejecting it,’’ she In cases where women access high quality sadness,’’ he says.
around the Auburn area. They are successful, says. ‘‘They feel ashamed about it so they hide ultrasounds early in their pregnancy, Dozens of men spoke to Sillence during a
self-sufficient and extremely supportive. But it and they don’t talk about it.’’ abnormalities can be identified and couples study at Westmead in the late 1990s. He hoped
Kaled’s disabilities have forced them to Australian-born mother-of-two Salima says referred to genetic counselling. They can then his research would lead to a funding grant to
reconsider their cultural practices. she does not explain her family situation to decide to terminate – an option allowed in the help establish a data bank of rare disorders, and
‘‘What we’re hearing from doctors and what anyone. ‘‘For us, it’s a very normal situation,’’ Muslim faith in the first trimester – or proceed improve screening and testing options.
happened to us, it’s very hard now to let our she says. ‘‘But it’s a very difficult topic, because with the pregnancy under expert medical care. But September 11 put paid to that. The
daughters and sons marry from their family,’’ in this society it is unacceptable.’’ But Jenkins says poor levels of awareness research funding dried up and the
Mohammed says. ‘‘I wish my sons and Salima was still at university when she first mean that many women book into antenatal community closed up. Politicians became
daughters would not marry from their family.’’ met her older cousin – an engineer from clinics too late, and never see trained genetic disinterested in health.
It is a viewpoint rippling across the Lebanese Lebanon who moved to Australia to find work. counsellors or pediatric specialists. Sillence hopes his research will gain
community. Nonetheless the subject is extremely The pair fell in love and later married. Their momentum again. In the meantime, he mops

Y
sensitive, and families fear recrimination for a youngest son, now 14, is autistic. ET EVEN women with the best medical up the tears and discourages interfamily
care have stories that are heartbreaking. marriage, except in cases where love is
Jenkins tells of one woman who learnt involved. This is because only love can
>The risks are far greater when blood relatives marry at 19 weeks that her baby had a lethal brain overcome the vast grief.
abnormality. She decided to carry the child. ‘‘You cannot know how much grief there is
■ Consanguinity describes the this means the vast majority of children ‘‘From her perspective, it was the will of until you do a study like this,’’ he says. ‘‘Your
relationship between blood relatives. are born healthy. ‘‘People think they will God,’’ Jenkins says. ‘‘It broke her heart, but the only research cost is Kleenex tissues. Grief can
Most common is marriage between first automatically have a child with genetic way she approached it was that she would do be like a well and that well is very deep for
cousins. problems and of course that’s not so,’’ the best she could because it was something these families.
■ Birth defects occur because blood she says. ‘‘The risk of having a [disabled] over which she had no control. ‘‘It’s grief heaped upon grief . . . the
relatives share a greater number of child when the parents are first cousins ‘‘It was a very painful experience . . . a very personal grief of a miscarriage, heaped upon
genes, so there is a greater chance of is around 5-6 per cent. challenging and confronting situation. My staff the grief of a community, heaped upon grief
both parents sharing the same faulty ‘‘The problem is that where there is a kept wanting to send her away for more tests in an international context.’’
gene. tradition for relatives to marry, you’ll get and I said, ‘No, that’s not what she wants’.’’ For Randa and Mohammed Assoum, love has
■ Children risk inheriting two copies of the grandparents who are first cousins, In the end, the woman’s baby died an hour kept them together. And as they sit side by side
the same faulty gene, and so being born the parents who are first cousins and the after birth. in the lounge room of their Lidcombe home,
with a genetic disability. children who are first cousins. Then the ‘‘[But] she got to meet her baby and she got their connection is obvious. They giggle, and
■ Parents who are not related face a chance of them sharing the same faulty to comfort it,’’ Jenkins says. ‘‘She didn’t have to smile at each other, recounting their courtship.
3 per cent risk of having a disabled child. gene is compounded and there risk is much make the decision to terminate the life of her ‘‘I loved him,’’ Randa says shyly.
For first cousins, the risk is twice as high. greater than the 5 to 6 per cent risk.’’ child. Her next baby was fine and it brought ‘‘We’re still in love and we’ll never stop
But, says Dr Kristine Barlow-Stewart, great joy to everyone involved.’’ loving each other,’’ Mohammed says. ‘‘Not
from the Centre for Genetics Education, See www.genetics.com.au. At the Children’s Hospital at Westmead, everyone has that. We’re just lucky, thank
geneticist Professor David Sillence believes God. And we love our children very much.’’
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