Call for changes to infant organ donation guidelines

“Allow parents to donate the organs of babies who die, urge doctors,” The Guardian reports. The paper reports that doctors from Great Ormond Street Hospital are arguing that current UK guidelines regarding organ donations from infants less than two months old (neonatal infants) should be changed.

Current UK guidelines deter neonatal donation, for several reasons, including the uncertainty about whether a neonatal infant is “brain dead" (has lost all brain function). These types of donations could be extremely valuable as they could help save the lives of other infants.

In many other countries, children can be classified as having brain death and families can donate. Donation after an infant had died because their heart has stopped beating, rather than after brain death, is possible. However, no such donations have occurred in an infant under two months of age in the UK.

A new study has estimated how many of the infants that died at Great Ormond Street Hospital could potentially have been organ donors, if guidelines were changed.

It found that of the 84 infants that died between January 1 2006 and October 31 2012, 45 (54%) were potential donors.

However, as the researchers did not have information on all factors relevant to transplantation, the actual number is likely to be lower. The number of families who might have consented is also impossible to know.

The Royal College of Paediatrics and Child Health is reviewing its guideline and is due to report in summer 2014.

Where did the story come from?

The study was carried out by researchers from St George’s Medical School, Great Ormond Street Children’s Hospital NHS Foundation Trust and London Donation Services Team, NHS Blood and Transplant. The source of funding for this study was not reported.

The study was published in the peer-reviewed journal Archives of Disease in Childhood and has been published on an open access basis so it is free to read online.

The results of this study were accurately reported by the Mail Online, the Guardian and BBC News.

The BBC also reported on the number of children waiting for heart transplants in the UK (four), and that The Royal College of Paediatrics and Child Health is reviewing its guideline and is due to report in summer 2014.

What kind of research was this?

This was a review of a mortality (death) database, a clinical document database, and a patient notes review. It aimed to determine how many infants that had died between 37 weeks’ gestation and two months of age between January 1 2006 and October 31 2012 at Great Ormond Street Hospital could have been organ donors.

This was a retrospective study and not all the information needed to assess whether an infant could be a donor was collected. Therefore the number of infants who could have been organ donors is likely to be an overestimate. It is also impossible to predict how many parents would consent to a donation.

A prospective study collecting all relevant data including families’ attitudes to donation, would be required to estimate the potential number of infant donors more accurately.

What did the research involve?

The researchers analysed information on infants that had died between 37 weeks’ gestation and two months of age between January 1 2006 and October 31 2012 at Great Ormond Street Hospital to see how many could have been donors using UK criteria for older children and criteria for infants from abroad.

What were the basic results?

Between January 1 2006 and October 31 2012, 84 infants died. Forty five (54%) were potential donors. Of this number, 34 were identified as potential donors after their heart had stopped beating and they died after treatment/life support was withdrawn. 11 were identified as being theoretical potential donors as they had symptoms of brain death, and also died after treatment/life support was withdrawn.

How did the researchers interpret the results?

“With around 60 paediatric organ donors in the UK annually, there does appear significant potential for donation within the neonatal population. Reconsideration of current infant brain stem death guidelines is required to allow parents the opportunity of donation after neurological determination of death, together with mandatory training in organ donation for neonatal teams, which will also facilitate donation after circulatory definition of death.”

Conclusion

This study from Great Ormond Street Hospital has found that over half of the infants who died were potential infant organ donors.

It is important to note that this is likely to be an overestimate as not all the information needed to assess whether an infant could be a donor was available, and the number of families who might have consented is impossible to know.

For some of these infants to become donors, guidelines would need to be changed and for all of them, systems would need to be put in place to facilitate transplantation after an infant’s heart stopped beating.

A new source of potential donation organs would be invaluable in treating rare but severe conditions such as tricuspid atresia where a baby is born with defective heart valves.

A neonatal heart donation could potentially cure this serious condition.