The shortage of donated organs means that for many in need of a life-saving transplant the only thing to do is wait, sometimes so long that the patient becomes too ill to undergo the operation. But much of the debate around increasing donation – opting in, opting out – and reducing the queue generally revolves around adults. But what if you’re a child in need, and a very small one at that?

Organ size is an important criterion for matching donated organs to a recipient, and organs donated from adults are often simply too large for a child. They need organs donated from another child. This is rare enough already, but as the authors of a new study published in the Archives of Disease in Childhood point out, the strict rules that govern how death is diagnosed in infants between 37 weeks and two months means that these babies can’t be donors. The situation has also created a “double standard” with doctors and parents turning to imported organs from places where the rules are less strict.

The ‘dead donor rule’

For adults who want to donate organs when they die, their death can be diagnosed in two ways: via neurological criteria (sometimes known as donation after brain-stem death) or by circulatory criteria (donation after circulatory death). In adults and older children, the way that death is diagnosed can have a bearing on which organs can be donated, as well as the condition of the organs when they are retrieved. Organs donated after brain-stem death are generally preferable to those donated after circulatory death.

These kinds of donor operations are led by the “dead donor rule”, which dictates that a patient must be dead before their organs are removed. But determining when someone is dead is surprisingly difficult as death is often more of a process than a clearly defined moment or event. The Academy of Medical Royal Colleges guidelines from 1991 suggest that it is “rarely possible to confirm death using neurological criteria in infants under two months of age”, and UK guidance states that since diagnosis of brain-stem death is unreliable under this age it should not be used.

The authors of the new study looked at babies between 37 weeks and two months who had died in neonatal or paediatric intensive care at a large specialist children’s hospital over a six-year period. Between 2006 and 2012, they worked out that more than half (54%) could have been potential organ donors; 34 after circulatory death and 11 after brain-stem death.

The infants in the second group had extensive brain damage, had been in a coma, were not breathing on their own and, the authors said, had evidence of brain-stem impairment. And all of them had died within minutes of their life support being withdrawn. The authors argue that the current guidance fails to recognise that these would have fulfilled the criteria for brain-stem death.

It is, however, considered acceptable in other countries such as Australia and the US to diagnose infants as brain-stem dead. This reluctance to diagnose brain-stem death in young babies prevents many potential organ donations, and the fact that the diagnosis is considered acceptable elsewhere suggests that the UK guidance is in need of revision.

As Richard Kirk, a consultant paediatric cardiologist in Newcastle caring for three babies in urgent need of a transplant, said to the BBC:

There is a crazy double standard operating – it’s forbidden to declare a baby ‘brain-stem dead’ in the UK and yet no-one minds us flying to Europe, where the doctors are allowed to diagnose brain stem death, and bringing the donated organs back to the UK to use. Where is the sense or ethics in that?

While organ donation from newborns is possible after circulatory death has been established, in practice it tends not to happen. Donating organs after circulatory death can require small deviations from the usual end-of-life treatment that a non-donor would receive. This can involve changes to where and when treatment is withdrawn, and minor interventions to ensure that the patient remains sufficiently stable for their organs to be donated.

These variations in treatment are considered acceptable for adults, because they are deemed to be in the patient’s best interests so long as they want to be an organ donor. But if these small interventions are not clearly contrary to their best interests, they may be still be ethically acceptable.

Difficult to contemplate

These concerns, on what can be broadly construed as medical grounds, are clearly not the only ones. The issue of organ donation and talking to families when a loved one dies is hugely sensitive. Many families can refuse consent or override decisions made by individuals once they have died. This is even more acute when it comes to babies. Retrieving organs is necessarily an invasive surgical procedure, and it may be very difficult for a parent to think about their baby undergoing this. Some may consider it unfair to ask a grieving parent to make a difficult decision about donating their baby’s organs.

For adults and older children, guidance emphasises that the possibility of organ donation ought to be part of standard end-of-life care. Staff are encouraged to present organ donation to the next-of-kin positively; as an opportunity to bring about something good from the death of their loved one, rather than as a sacrifice or an additional trauma. A shift to this kind of approach with young babies would provide consistency, but would also provide grieving parents with additional options to find something positive in the death of their baby.

Nobody likes to think about young babies dying, but it does happen. And the outcome is still the same regardless of whether they donate their organs. Provided that the process meets the established ethical framework of organ donation, allowing these babies to have their organs donated would give other young babies and children a better chance at life. And it is this that continues to drive clinicians and advocates into asking loved ones to consider donation at the worst possible time.