Shine A Light

If you could prevent brain damage in a child, would you?

Ahead of a debate in Parliament the eminent paediatrician and former first Children’s Commissioner for England urges the UK Government to take action on the most important preventable cause of brain damage in children.

Al Aynsley-Green
9 October 2014
NIAMH_0.jpeg

artwork by Niamh

Exposure to alcohol before birth is the most important preventable cause of brain damage in children that could affect up to 1 in every 100 babies in England. Its effects range from devastating physical and learning disabilities to subtle damage causing bad behaviour, violence and criminality.

In contrast to Canada, there is denial in Westminster of the importance of the problem. I call on politicians to grasp its seriousness and provide coherent research and policy strategies to address it. A House of Commons debate on Tuesday 14 October is an opportunity to show leadership.     

I’m sitting in a class of 7 year-olds in a parenting programme for 4-11 year olds in a school in Winnipeg, Canada. “What do you never drink when you have a baby in your tummy?” asks the facilitator. “We never drink alcohol, Miss,” chorus the children.

I move on to a conference in Toronto on prenatal alcohol exposure organised by NeuroDevNet for several hundred scientists, clinicians, lawyers, parliamentarians and lay people. 16 year-old Emily (not her real name) has severe learning difficulties but stands up alongside her twin sister describing courageously what it is like to be affected by alcohol drunk by their Russian birth mother before being adopted by her Canadian family.  Emily describes social isolation, bullying, fidgeting, impulsivity, distractibility and loud noise intolerance with poor concentration that makes learning difficult.

I’m coming through Toronto airport. Large posters urge expecting mothers not to drink alcohol.

Canadians take seriously the impact of alcohol before birth. Federal and Provincial Governments are convinced that prenatal alcohol causing Fetal Alcohol Spectrum Disorder (FASD) is the most important preventable cause of severe brain damage in childhood affecting affluent families as well as Aboriginal people. Less badly affected children exhibit poor behaviour in their schools and communities, populating their prisons.

They express incredulity that the economic let alone the human cost of the syndrome has not been grasped by politicians in England.

The Provincial Government of Alberta’s ten year strategic plan allocates annually $16.5 million to prevent FASD and support affected families through 12 assessment and diagnostic clinics and ‘Wrap-around’ services for affected school children. Proponents argue that preventing FASD in just ten babies each year saves enough money to fund the services.

Provincial and local government funds Manitoba’s FASD Centre that employs social workers, geneticists, developmental paediatricians and psychologists to provide comprehensive assessment, pregnancy and FASD prevention services; there’s a 24-hour, 7 days-a-week helpline for expecting mothers alongside outreach support for children, families and adults living with FASD.

The Canadian Journal of Obstetrics and Gynaecology educates clinicians through seven practical scenarios in managing the condition. (Journal of Obstetrics and Gynaecology Canada Vol 32:number 8 Suppl 3; August 2010 Alcohol Use and Pregnancy Consensus Clinical Guidelines)

The First International Conference on preventing FASD was held in Edmonton in 2013, alongside a conference for the criminal and family courts to review the implications for guardianships, the role of legal systems in preventing FASD and ethical, human rights and economic consequences. A landmark international charter has been published.

Here in England I have walked my cathedral city’s streets into the early hours with Street Pastors to witness the devastating effects of alcohol on young people, especially young women. Increased consumption, soaring cirrhosis of the liver, binge drinking, and impact on crime are the reality of everyday England. But in contrast to Canada, there is little debate or political interest in the reality of concurrent FASD.

I wrote to the Chief Medical Officer in November 2012 to draw her attention to the stark difference in lack of focus compared to Canada. She confirmed that Government shared my concern that alcohol is a major public health issue, but she wrote:

“We believe it will be necessary to make progress in developing agreed diagnostic criteria for the various conditions causing FASD before it would be possible to make estimates of any prevalence with any confidence.”

She concluded: “it would be sensible to await WHO’s findings and their discussion of the diagnostic criteria used before deciding how we take work forward in this country.”

I shared her letter with colleagues in Canada. They asked: “Why are you guys sleep walking over the most important preventable cause of brain damage in children?”

Here we have a paucity of research on prevalence but a wealth of uninformed opinion. Is low alcohol intake harmful? We don’t know. Are there genetic reasons why some mothers clear alcohol from the blood stream at a faster rate than others? New research suggests there might be, perhaps explaining why some infants are more affected.

How much do English mothers drink? We don’t know, but international statistics show the likely scale (analysis by Dr Neil Aiton, a consultant paediatrician at Brighton and Sussex University Hospital NHS Trust):

  • • up to 80-90 per cent of women of childbearing age drink regularly,
  • • 25 per cent age 18-25 and 21 per cent age 25-44 drink more than 14 units of alcohol per week,
  • • 15-20 per cent of women continue during pregnancy,
  • • of whom 2 per cent or so drink heavily, suggesting that at least 1 per cent of children born in England could be affected by FASD, a figure consistent with other countries

Yet 23 per cent of midwives seem not to be aware of current guidelines, Neil Aiton tells me. Only 59 per cent of midwives are comfortable asking pregnant women about alcohol although some mothers are demanding termination of pregnancy because of fear over the effects of an alcoholic binge on their fetuses.

Social workers tell me of the serious problems in adopting affected infants because they are such ‘difficult’, fractious babies with feeding and sleep disturbances. Placements with adopting families can break down because of the challenges they present. Affected families describe their unhappiness with the services provided, and affected children suing birth mothers for damage is now a reality.

Our Government’s Alcohol Strategy makes only a single, thoroughly inadequate reference: “Fetal alcohol spectrum disorders (FASD) result from mothers drinking alcohol during pregnancy. They are lifelong conditions that can have a severe impact on individuals and their families….. They are caused entirely by drinking during pregnancy and so are completely preventable. We do not have good information about the incidence of FASD, so it is likely that significant numbers of children are not diagnosed.”

I have seen good things being done by motivated colleagues. Voluntary organisations (such as the FASD Trust and NOFAS) without any Government support provide excellent literature and education resources. A Professional Consensus Statement has been published. Some local authorities are developing awareness programmes and there are a few clinical services where colleagues tell me of their frustration in getting Clinical Commissioning Groups to provide funds.

So, what is needed? I call for:

  1. More research into the prevalence and impact of FASD in the UK 
  2. Clearer data and guidelines around alcohol consumption during pregnancy
  3. Mandatory labeling on all alcoholic products highlighting the risks of drinking alcohol while pregnant; 
  4. More training for midwives, doctors and others in preventing and managing FASD
  5. Development of comprehensive clinical pathways and regional support services 
  6. Better education for children and adults
  7. Raised public awareness of FASD by Government working with medical Royal Colleges, the British Medical Association and others.

We must have the courage to confront the inconvenient truth exposed by the mis-match between Canada and England in addressing FASD. A Parliamentary debate on FASD is scheduled for the 14 October. I call on all to wake up to the reality of this entirely preventable scourge afflicting so many children today.

A video explaining FAS and the work of the FASD Trust

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This article is based on a speech at the conference on the effects of alcohol on the unborn baby organised by DrinkWise, Manchester, 11 September 2014.

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