his is a story about as strange as they come, at least for a non-western audience. The issues that it throws up would sound almost weird to Pakistani ears, but the concept of parental and family rights when seen through the prism of the rights of the state in a social welfare state look rather different. For once the state takes on itself the responsibility of providing for all the basic needs of its citizens, it almost presumes that this gives it certain rights.
The central character in our story is Baby Charlie who is now about eleven months old. He was born seemingly fine and healthy but soon after birth, his parents noticed that all was not well. For Baby Charlie was not able to lift and hold his head as other babies of the same age were. Worried about their child, they started what would turn out to be a long medical process. After a series of tests, Baby Charlie was found to have a rare genetic disorder which affected his mitochondrial system and like most rare diseases there was no cure for it. The doctors in the UK tried to do what they could, but the condition of the child kept deteriorating. Finally, reports said that his brain had been severely damaged, that he had lost his sight as well as his hearing and was kept alive on a life support machine.The doctors ultimately came to the conclusion that Baby Charlie did not have any hope of a meaningful life.
The parents, fighting for their child, had heard of an experimental treatment in the United States and now started a public appeal to raise money for Baby Charlie’s treatment in the US. They had set out to raise £1.3 million but soon exceeded that mark and ended up raising £1.4 million. But then came their biggest hurdle. The hospital authorities would not allow the child to be taken abroad. To many, this would sound insane; after all, the parents were not asking for any financial support from the hospital and surely they should be the best judges of how exactly to deal with their child’s illness. Believe it or not, the matter went to a court of law which ruled in favour of the hospital and decided that the child should not be allowed to be taken to the US for treatment. The appeal court upheld the decision and finally the parents went to the European Court of Justice which also upheld the judgment of the British courts.
The medical argument was that Baby Charlie’s brain had been so severely damaged that he simply had no hope of a meaningful life, that the treatment being offered in the US had practically no chance of success and that all it would do would be to prolong Baby Charlie’s misery. The child obviously could not speak so there was no way of knowing exactly how much pain he was suffering but the overarching argument was that his condition was such that his life was no longer worth fighting for or, prolonging. The argument that the parents should have the opportunity of trying everything they could, if nothing then for their own satisfaction in a matter of utmost importance to them and one which remain with them all their lives, did not get much of a showing.
The hospital then decided on a day when the life support system on which Charlie was living, would be withdrawn. The parents wanted to take the child home so that he could die at home, but that prayer was also turned down. The parents, who had been living in the hospital by the side of their desperately sick boy, prepared for the inevitable. One can only imagine what they must have been going through.
As some element of human consideration finally entered the equation, the hospital stayed its decision on when Baby Charlie’s life support would be withdrawn, allowing the parents to spend some more time with their son. Then the US President Donald Trump intervened and so did the Pope. President Trump said that the White House would do all it could to help the child if he was brought to the US for treatment and the Pope also said that Baby Charlie should be given every chance for life. Which is where matters stand at the moment. A medical question has been raised to the effect that the child should have been sent to the US earlier when his condition was not quite as bad as it is now, when a successful treatment might have meant that his life would have some quality. But in truth that is now neither here nor there.
The overwhelming likelihood is that Baby Charlie probably does not have much longer to live. But the issues raised by this case are of such a nature that they may well define some basic concepts of modern western civilisation for generations to come. Is life and death now a matter in the hands of doctors rather than He who creates life. Who gives doctors the right to play God is a question that has often been asked and the answers would not convince anyone. Life, as in Baby Charlie’s case, is now defined as something that is of value as long as it is worth living; the message that one seems to be getting is that if it is not, then it can – even should – be terminated.
And in all this, what about the rights of parents over society, as represented by the doctors and the courts. Should not the parents be the ultimate decision making authority when it comes to their juvenile children, and if not, at what point does the state have the right to take over that right.
Scientific advancement is a complex factor and it brings in its wake many complex attitudes to life and human relationships. Perhaps those of us who live in what is rather patronisingly called the ‘developing world’ still have some things for which we need to
be thankful. •