Child health

The parents of a young girl with epilepsy have to travel from the UK to the Netherlands for medical cannabis.

Winifred Robinson has returned to Bradford every year to report on mothers like Ruba, who is now 27. When they first met Ruba had a son, Hassam, and had just given birth to a little girl, Alishbah. Tragically both children were diagnosed with a rare condition, I-cell disease and have since died. Ruba is pregnant again and Winifred talks to her about genetic screening and the difficult choices she must make. She is married to her cousin and there is a one in four chance of her next baby being born with this fatal condition.

Researchers in Bradford have documented the incidence of genetic abnormalities linked to cousin marriage, which doubles the risk of passing on the recessive genes that lead to abnormalities. Cystic fibrosis is the one we all know about, where two healthy parents carry a recessive gene: in Bradford doctors have identified more than 200 rare conditions. Data collected by the British Paediatric Surveillance Unit has shown since 1997 there have been 902 British children born with neurodegenerative conditions, with 8% of these in Bradford, which only has 1% of the population.

"Everything we do gets translated into practice so that our work on congenital anomalies has led to a city register for these children and also a Yorkshire register" explains Professor Wright, the Director of the Bradford Institute for Health Research. On the face of it the risk is not great - a 4% risk of having a child with an abnormality if you marry a cousin, compared with 2% among the general population. But with repeated cousin marriage, the risks stack up in families with sometimes devastating results.

The Born in Bradford researchers are determined that theirs should be an applied health research study with results leading to better services. They have just secured £49 million of lottery funding to intervene in the lives of a new cohort of mothers as part of the Better Start initiative: "We want everything we find out in the research studies to be translated into practices that improve the health and well-being of people in Bradford and further afield" says Professor Wright.

The study was launched in 2007 and provides great insight health and lifestyle in the city. About 46 per cent of mothers in the study are from Pakistan, providing a fascinating insight into a new multi-ethnic generation. The impetus for research came from high infant mortality rates - double the national average - and so far the data has resulted in changes in national policy. Bradford now screens all pregnant women for gestational diabetes and Winifred meets those being encouraged to change their diet and habits to give their babies the best start in life.

Produced by Sue Mitchell.

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