The babies paying the price of cultural tradition: It’s estimated that more than half of Pakistani-heritage couples in Britain are in cousin marriages. Now community leaders are confronting the troubling medical risks, writes SUE REID
- Tahira Naqvi, 40, who lives in Bradford, lost her first baby after marrying cousin
- Babies born in cousin marriages can suffer from ‘recessive’ genetic disorders
- Pakistani and South Asian heritage are disproportionately affected
- Tahira volunteered with Born In Bradford project to help stop death and illness
At her tidy semi-detached home in the North of England, Tahira Naqvi still grieves for her first baby, who she lost as a newlywed bride of 21.
Her son was stillborn midway through her pregnancy. ‘I can never forget him,’ she says with sadness. ‘A hospital pre-birth scan had showed he had a club foot, but doctors didn’t warn me that he might die a few weeks later.’
Tahira is one of hundreds of mothers in Britain touched by tragedy after marrying a cousin. Now 40, she has gone on to have four other children (two boys and two girls) with her husband from Mirpur in the Pakistan-administered region of Kashmir, who is her mother’s brother’s son.
The family’s house overlooks a back garden dotted by children’s bicycles in Bradford, where a vast study has investigated childhood illnesses.
Babies of Pakistani and South Asian heritage are disproportionately affected by genetic problems. Pictured: Tahira Naqvi who lost her first baby after marrying a cousin at age 21
The Born In Bradford Study found that half the city’s babies born each year are to Pakistani-heritage mothers. Like Tahira, two-thirds of these women are married either to first or second cousins, a fact which heightens the risk of their offspring dying or having disabilities.
This multicultural part of Yorkshire is not the only place where baby deaths or illnesses are being blamed on close-kin marriage. Britain’s second city Birmingham recently announced an emergency taskforce to investigate high levels of infant mortality after health and social care officials revealed deaths of newborns there are twice the national average.
While poverty and deprivation play a role in the crisis, a fifth of all infant deaths are a result of genetic problems caused when cousins marry and have children, says a report from Birmingham City Council. Babies of Pakistani and South Asian heritage are disproportionately affected, with one in 188 stillborn compared to one in every 295 white babies.
The disturbing disclosures so alarmed the former Chief Crown Prosecutor for North-West England, Nazir Afzal, that he said there is a case for barring marriage between close relations to end the suffering of ‘profoundly affected children and parents’.
The prominent campaigner for women and children’s rights, whose own parents arrived in Britain from Pakistan, explained to the Mail: ‘The first duty of a Government is to protect its citizens from harm. There is a strong argument, down the road, for it to consider whether first-cousin unions should be outlawed in the same way as incest is. We are tired of burying our babies.’
Mr Afzal, who successfully prosecuted the Asian sex abuse gang in Rochdale, Greater Manchester, added it was ‘ridiculous’ that cultural sensitivity stopped people talking about a problem that has been in ‘plain sight’ for years ‘bringing misery to dozens of families’.
His stand is not only outspoken but brave, for criticism of cousin marriages is taboo among Pakistani and South Asian communities. Mr Afzal’s critics have already told him his controversial remarks target ‘disabled children’.
Some 55 per cent of Pakistani-heritage couples — like Tahira and her husband in Bradford — are in cousin marriages (file image)
Yet nothing could be further from the truth. He insists that in 21st-century Britain, the damage caused by these close-kin marriages — which are taking place not just in Birmingham or Bradford but all over the country — can be prevented.
‘We need to follow the science and act to save lives,’ he says.
The problem is that babies born in cousin marriages can suffer what are called ‘recessive’ genetic disorders, associated with severe disability and early death.
These disorders are caused by variant genes. If you inherit one recessive variant gene you will not fall ill or die. If, however, a child inherits the same variant gene from each of its related parents, it is at higher risk of a health problem.
The likelihood of a couple both having the same variant gene is 100 to one in the general population. In cousin marriages, that can rise to one in eight because people who are related to each other are more likely to carry the same faults in their DNA. And the problem only intensifies as cousin marriages continue generation after generation.
Yet despite the health dangers, it is estimated that 55 per cent of Pakistani-heritage couples — like Tahira and her husband in Bradford — are in cousin marriages.
And while British Pakistani couples are responsible for 3 per cent of births overall in the UK, they account for a third — 33 per cent — of children with genetic birth defects.
The unions — called, in medical parlance, consanguineous, meaning a marriage between close relatives — are popular because they are believed to strengthen the family unit and keep wealth intact.
Mr Afzal, a practising Muslim, says succinctly: ‘They are arranged for material reasons, not because of religion. Families don’t want to risk their gold by allowing their child to marry an outsider. Some brothers betroth their boy or girl at birth to each other. Where is the choice of partner for their adult child?’
Official government figures for England claim cousin marriages are a key factor in an average of two child deaths every week (file image)
Official government figures for England, uncovered by the Mail in 2018, revealed cousin marriages are a key factor in an average of two child deaths every week. Distressingly, many surviving children of the couples involved have physical or mental problems.
These include blindness, deafness, blood ailments such as thalassemia — which can make sufferers anaemic — heart or kidney failure, lung or liver ailments, and myriad complex neurological or brain disorders.
Doctors working with the Born In Bradford study have in the past identified 140 different gene disorders among local children, compared with 20 to 30 you would expect to find among the general population.
Little wonder that Shabana Qureshi, manager of the Ashiana Community Project supporting women of South Asian heritage in Birmingham, has welcomed the city’s task force to tackle baby deaths.
She says: ‘Silence helps nobody. I see the devastating impact on families who suffer loss (of their children) in this way, sometimes multiple losses. It is heartbreaking.’
Qureshi adds that the issue of genetic problems being associated with cousin marriage is not discussed even when families lose a child or have a badly disabled baby.
Both Ms Qureshi and Mr Afzal say genetic screening and sympathetic discussion should be routinely offered to cousins hoping to marry.
But what of the children of consanguineous couples? What do they have to say? Across the Pennines from Bradford, in the former Lancashire mill town of Nelson, we spoke to 28-year-old Azmaht Mahmood. He runs a school uniform shop owned by his divorced mother, Parveen, who married a cousin.
Azmaht Mahmood, 28, who lives in Nelson, was so ill at 15 months old that he had to have a liver transplant (file image)
I had met Azmaht before, but wanted to catch up with him after hearing of Birmingham’s new offensive against high rates of child deaths and illness.
He was born with a rare but life-threatening genetic liver complaint called propionic acidemia. At 15 months Azmaht was so ill he had to have a liver transplant.
While he is cheerful, and a delight to meet, it is clear his health is not good. He takes a cocktail of powerful pills every day to help him survive. His older sister, Sirah, is luckier. She arrived in the world healthy and remains so.
Peering through strong glasses but with a beaming smile, Azmaht said: ‘I know my parents are cousins and that is why I am like this. I have something wrong with my heart too. I go to hospital check-ups a lot,’ he says. ‘But I follow Manchester United, play snooker and go to a youth club where other people have disabilities. We understand each other well.’
His mother is not so accepting, although she understands that close cousin unions are part of her family’s culture and the norm.
‘The birth of Azmaht did put me off having more with my ex-husband because I could not go through it again, having another child with the same problem. I know it isn’t guaranteed to happen (if you marry your cousin). It’s a high risk though, about one in four,’ she has told the BBC, which followed the family’s story.
Azmaht who has not yet found a bride, said he wouldn’t marry one of his relatives because he doesn’t want anything like what happened to him to happen to one of his children (file image)
So who will Azmaht marry one day? ‘It will not be a cousin,’ he tells me emphatically as he explains that he has not yet found a bride.
‘I may have an arranged marriage, but not to one of my relatives. I would not want anything like what happened to me to happen to one of my children.’
And what of Tahira who greeted me at her front door the other day? Her four children, aged between six and 14, are out at school.
Her eldest boy, then aged four, was chosen for a poster campaign asking local families to sign up to the Born In Bradford project and help discover why so many of the city’s children — like Tahira’s still-born first son — die or have disabilities, from limb malformation to complex neurological ailments, that defy the skills of even the best doctors.
The project’s researchers soon discovered that stillbirths and infant deaths in the city were almost double the national average and that there was a worrying spike in child genetic illness.
Worryingly, the number of children damaged by consanguinity is predicted to increase as the birth rate in ethnic communities goes up.
Doctors are excepting the number of children damaged by consanguinity to rise to 2,400 a year by 2031 (file image)
In Yorkshire and Humber — taking in Bradford, Kirklees, Leeds, Sheffield, and Rotherham — doctors say they deal with around 600 cases a year. But they expect this figure to rise to 2,400 a year by 2031, according to documents published by public health officials in the area.
Tahira volunteered to take part in the Born In Bradford project because she hopes it will help stop this relentless tide of child illnesses and death.
As she told me: ‘Cousin marriage is an important part of my culture. It is not a religious thing, but a custom. But I now realise these marriages bring health problems and I think it is time for change.’
Tahira is one of eight children born to parents who settled in Yorkshire from Pakistan; her first-cousin husband is a taxi driver seven years her senior. Three of her siblings have also married cousins, including her younger sister who lives across the road from her with children who are thriving and healthy.
‘Many cousin couples still ignore the truth,’ she says. ‘The older generation are reluctant to see the reality. They say if a family has a disabled child it is God’s will.
‘Yet the younger generation are getting wary of marrying a cousin. I don’t think I will let my daughters do it, for instance, because it is such a worry thinking your baby might die or be born with a disability.’
Tahira said she no longer believes that it is “pot luck” if you have a baby who is stillborn, dies in childhood, or has these illnesses. Pictured: Tahira with a picture of her children
Apart from her own stillborn child, Tahira’s extended family in Bradford and in Pakistan have faced a host of other medical issues which, she believes, are linked to cousin unions.
The eldest of her surviving children, the boy featured in the Born In Bradford project, was born five weeks early with medical problems stemming from the fact his gut and stomach were not joined together. He was successfully operated on as a baby and is now fit and well.
Over in Pakistan, a nephew — also the child of cousin parents — was born with the same condition. Unfortunately, there were no doctors on hand to intervene and he passed away at two days old.
Nearer to home in Bradford, another of her cousins lost her four-month old baby from a lung condition before she had two healthy children. Then, just three years ago, the same mother gave birth to what Tahira calls ‘baby number four’, with an identical lung condition to that of the sibling who died.
‘I know some people in my community say it is just “pot luck” if you have a baby who is stillborn, dies in childhood, or has these illnesses. I don’t believe that any more,’ says Tahira as she bravely talks about a sensitive subject that few will discuss.
However, as the redoubtable lawyer Nazir Afzal added: ‘This issue involves thousands of couples in Bradford, Birmingham, right across the country. It is something that should no longer be brushed under the carpet.’
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