I write with reference to the Charlie Gard case as a father who held his seven-month-old son Rory as he died of an incurable illness at Naomi House in 2010. This was despite the efforts of the medical profession, to whom I renew thanks for my son’s care and the love he received.
Bar a month or so, Rory lived in the high dependency and intensive care units of a hospital with my wife sleeping by him, and finally a hospice where we and our daughter lived with him for his last weeks.
We did not always agree with his treatments and we did debate, question and challenge where we felt the need, but we were aware we were tired, emotional and not in control. The lowest point in our dealings with doctors was the unfortunate manner of one when we first heard Rory was untreatable and would not live. It should have been handled better. Rory did briefly return home to us on the day of his funeral.
I am troubled by some elements I have read concerning Charlie’s case for life as so desperately and lovingly pleaded by his parents, to whom I express utmost admiration and support. I only hope they manage their grief now and in the years to come.
Doctors as professionals give objective advice (even if clumsily) and judges a ruling, ultimately on the evidence and law or medical treatment as they understand it at a given point (but an all-powerful one). One tries to respect that when faced with the prospect of your child’s death. It is trying and exhausting for all concerned – and for loving parents, to the most unimaginable extreme.
Mercifully, Charlie was unaware of the arguments raging around him. His parents will clearly be greatly and permanently affected. I wish them strength.
A final calming comfort can equally be achieved in a hospice, as we experienced with Rory, just as in a home; a private and calm place to say goodbye. A butterfly was placed on the outside of the door to advise all a child had died.
While some on both ‘sides’ have chosen poorly in their criticisms, the courts should not be the arena in which these cases are decided. There is much to gain if parties are completely clear as to their respective positions and thinking as treatment progresses, and minds are not closed as to early treatment which the UK may not be able to administer.
Rupert Morton-Curtis, Solicitor, Wiltshire
