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Great Ormond Street Hospital study highlights untapped potential of newborn organ donation in the UK

18 March 2014

Great Ormond Street Hospital sign

A ‘significant’ proportion of full-term newborn babies who sadly die in intensive care in the UK could potentially have donated organs to save another child’s life if national guidelines permitted, according to new research carried out at Great Ormond Street Hospital (GOSH).

The study, which took place in the London hospital’s neonatal and paediatric intensive care units between 2006 and 2012, showed that of the 84 infants aged between 37 weeks and two months old who died during that period, 45 (54 per cent) could have donated organs with their parent's consent.

The research paper, published online by the journal Archives of Disease in Childhood: Fetal and Neonatal Edition, shows that this potential for organ donation among very young babies is currently ‘untapped’ in the UK because of national guidelines around the way clinicians define and diagnose death.

These guidelines, created by the Academy of Medical Royal Colleges, currently restrict British doctors from diagnosing brain stem death – the most common scenario for successful organ donation – in infants less than two months of age.

This restriction stands in contrast to the rest of Europe, the United States and Australia, where doctors are able to diagnose death using brain criteria in younger babies and neonatal organ donation takes place.

The anomaly means that very young British babies in need of a lifesaving heart transplant – where only a tiny newborn heart will be suitable – must hope that a heart becomes available elsewhere in Europe and is flown in. It also means that while the UK accepts newborn hearts from Europe, there can be no reciprocal arrangement.

If guidelines permitted, infants could also donate other organs including liver, lung, kidneys and bowel.

Organ donation from newborn babies is also theoretically possible after death is diagnosed using ‘circulatory criteria’, rather than brain stem death. However, the authors of the report – Elinor Charles of St George’s Medical School, Dr Joe Brierley, intensivist and organ donation lead at GOSH, and Angie Scales, GOSH-based specialist nurse in organ donation – say this does not happen in practice for this age group, and there is limited worldwide evidence of successful outcomes.

Commenting on the research, Dr Joe Brierley said: “This research provides us with a glimpse of what might be possible in the UK if our guidelines around diagnosis of death in very young babies were brought into line with other countries. At Great Ormond Street Hospital we witness first-hand the urgent need for organs for children of all ages – but small babies particularly have the odds stacked against them because they need to be matched with the tiny organs of similarly-aged children.

“Organ donation is a very emotive topic, particularly when it involves children, but I believe it is an option that should be available to a young child’s family if they decide it is the right choice for them. The loss of a child will always be an extremely tragic and heartbreaking experience, but a lot of parents who decide to donate their child’s organs later find some comfort in the knowledge that at this most tragic time for their own family, they were able to do something extraordinarily kind to help another child – or perhaps several children.”

Angie Scales, an NHS Blood and Transplant specialist nurse in organ donation based at GOSH, added: “Offering choice around end of life care is an essential part of caring for families and many find great comfort in something positive coming from the death of a loved one. Where donation is a possibility, information given sensitively can help families make an informed choice about what is right for them. We support a review of the current guidance which will enable donation to be considered by parents of a child under two months.”

Contact information

For more information or to arrange an interview with Dr Joe Brierley, please contact Caroline Butcher in the GOSH press office on 020 7239 3178 or caroline.butcher@gosh.org

For genuine and urgent out-of-hours queries call switchboard on 020 7405 9200.

Notes to editors

Great Ormond Street Hospital is a specialist children’s hospital with National Commissioning Group (NCG) neurovascular and cardiac services. Infants with brain disorders including complex blood vessel malformations, severe brain infections, stroke and traumatic brain injury are cared for on the neonatal unit.