I don’t often listen to a radio programme with wholehearted attention but having stumbled across one of the Inside the Ethics Committee series, broadcast on BBC Radio 4 at 9am yesterday, I applaud it. The subject was “Organ donation and newborn babies” and the presenter was Joan Bakewell. For a subject that seems intrinsically gruesome, she chaired the discussion with sensitivity and not once in the whole 45 minutes of the programme’s airing did I feel that the participants were other than caring and respectful to the humanity of the baby they were talking about.
This was the baby son of Kenny and Elizabeth, a twin (he had a healthy sister) who was discovered after a prenatal scan to have anencephaly, a condition in which the brain doesn’t grow and which is always fatal. The couple, both Christians, decided against an abortion because, as they said, “life begins at conception” and it is “God-given”. A doctor made the comment that many couples in a similar situation choose not to abort because despite the sorrow of knowing that if the baby survives birth he or she will die shortly afterwards, they want “the positive experience” of “meeting” the baby for however short a time. He added – without any suggestion of a religious viewpoint – that a termination in such a case was a quick-fix solution and didn’t solve the problem of the parents’ need to work through their grief.
The panel that Joan Bakewell consulted during the programme included a professor of clinical ethics and member of the UK Donation Ethics Committee; a professor of complex obstetrics; and a professor of neonatology. All of them showed the highest standards of medicine in their recognition of the baby’s humanity and the dignity with which he should be treated, despite his brief life. It was recognised that “just because we can [do a complex medical procedure such as organ transplant], it doesn’t mean we ought”. One expert commented that “the best way for a baby to die is in his parents’ arms” – but added that “couples long to see some good coming from this tragedy”.
It was clearly the couple’s idea to offer their baby’s organs for transplantation “in order to help other families” and to have a positive outcome of private sorrow. It seems that donation of organs from an anencephalic baby has never happened before in the UK. It was explained that for the retrieval of a baby’s organs, normal death occurs, ie the heart is allowed to stop naturally for five minutes beforehand. This is because, unlike adults or older children where a criterion of “brain stem death” is used, there is no criterion for judging brain stem death in tiny babies. It was emphasised that a baby without a brain is still “a unique individual and member of a family”.
A contentious area was discussed: should a baby in this state be ventilated before death? The panel were agreed that the baby should not be regarded merely “as a means of getting organs”; this would not be “ethically acceptable”. Although the parents made the decision that they wanted to donate their baby son’s organs, they also wanted him baptised beforehand, because he was “precious in God’s eyes”. In the event, Elizabeth’s waters broke at 34 weeks and the twins had to be delivered early by C-section. The midwife put a little cap on the baby boy’s head to conceal his cranial deformity and he spent time with his parents, grandparents and baby sister before being sedated and attached to a ventilator.
As it turned out, his small size and birth weight meant that no suitable recipients were available for organ donation so he was allowed to die naturally. The ventilator was unattached and the couple spent 12 hours with him before he stopped breathing. Although organ donation had not been possible, they still felt they had done the right thing.
After listening to this excellent programme I felt acutely the irony that here doctors are using all their expertise in recognising the humanity of a baby with a fatal condition while still in the womb and being sensitive to his parents’ natural attachment to him, while at the same time the medical profession accepts without protest a mother’s right to end an unwanted pregnancy of a healthy baby for the flimsiest of reasons.
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