The latest news on the Liverpool Care Pathway, the controversial medical protocol designed to make the dying process more humane, is that it is being applied to very sick babies. I was about to write here “terminally ill” babies – but this is the problem: the LCP has been used in some well-publicised cases where the patients – including babies – are not dying. I read a chilling report last week by an anonymous doctor which described the case of a baby born with multiple congenital problems but who was not about to die. The decision had to be made about whether to treat the infant and help him to live, with all the difficulties involved, or whether to let him die by neglect ie by withdrawing food and liquids. The parents, after consultation, decided they could not cope with a handicapped child so it was agreed the baby should be left to die. This, the doctor related, was for him an agonising process. He admitted feeling extreme reluctance to monitor the infant during the many days the baby took to die, because of the horrific effects of the severe dehydration.
I mention this case because it illustrates the stark moral questions involved. There is a huge difference, for instance, between deciding not to treat a very premature baby who, without immediate and comprehensive medical intervention of an intrusive and painful nature, would die soon after birth, and the story above: a baby with severe, long-term disabilities for whom euthanasia is the deliberately agreed “solution”.
Journalist Dominic Lawson has written very movingly in a recent article in the Daily Mail of his love for his daughter, Domenica, who has Down’s syndrome. Down’s is a chromosomal disorder – but not a life-threatening condition. In the not so distant past there have been some notorious stories of babies born with Down’s who have also been left to die of neglect; in one case in America, Mother Teresa pleaded for the baby in question to be handed over to her nuns who were willing to give it the loving care it needed to thrive. Today, over 90 per cent of babies found to have Down’s in antenatal tests are routinely aborted.
This is an immense tragedy, born of an instinctive fear of a child who is not “normal”. But the price of choosing to eliminate such children is very high. The late Professor Jérôme Lejeune, the geneticist who discovered the cause of Down’s syndrome and who spent his entire medical career seeking to find a cure for it, wrote: “The quality of a civilisation can be measured by the respect it has for its weakest members. There is no other criterion.” He also pointed to the Spartans: “The only ones to eliminate newborns that they believed would be unable to bear arms or beget future soldiers… And nothing remains of [Sparta]: it has left us not a single poet, not a single musician, not even a ruin. Sparta is the only Greek city that contributed nothing to humanity. Is that a coincidence or is there a direct connection?”
I have also been reading an inspirational book by Leticia Velasquez, mother of a daughter with Down’s syndrome, who has set up the pro-life organisation KIDS (Keep Infants with Down Syndrome) to raise awareness in the US of the high abortion rate for such children and to persuade parents that there is another choice if they can find it within themselves to make it. Her book, A Special Mother is Born, focuses not on the babies born with severe special needs but on their mothers (and in some cases fathers) who tell their own honest and courageous stories in its pages. These mothers aren’t heroes. They are ordinary women with ordinary human weaknesses faced with an extraordinary choice: to love and nurture their challenging babies – or not. Despite not always having a strong faith to begin with, or material resources to cope with the problems presented to them, these mothers chose life; as the book relates, this choice has brought them unexpected rewards, such as stronger marriages, closer families, renewed faith and new pro-life apostolates.
I do recommend it as part of the literature that all new parents of severely disabled babies should be given – to help them make the choice to go down “the road less travelled”.