Ahmad was wearing the wrong genes

 A version of this article was published by the DAWN today




Chief Rabbi Dr Jonathan Sacks Yitzhak Perlman, one of the world's greatest violinists, contracted polio at the age of 4. Ever since, he's had to wear metal braces on his legs and walk with crutches. Once when he was giving a concert, a string on his violin broke. Instead of calling for a new violin he continued to play on three strings. When the concerto was over, the audience gave him an ovation and called on him to speak. He did. He said one sentence that everyone there knew referred not only to the broken string but to his disability and much else that is broken in this world. He said: "It's our task to make music with what remains."

Excerpt from BBC Radio 4 thought for the Day, 15 December 2006

I watched him arrive again on the hospital ward that Friday, Ahmad was destined to die a slow and painful death you see. He had, in fact been dying for some time and this was not news to anyone. Over the last three years, he must have been aware for that his condition was deteriorating. He often struggled to breathe despite the oxygen that the Doctors had arranged for him, his muscles were wasting away bit by bit because of his condition. Each time he picked up one more infection, he must have thought “this is it..I am going to die now”. Despite this, despite the battering his body was taking, he was strong, and would somehow make it to another day. He would visit the ward often and the nurses as well as the Doctors knew him well. His family cared for him and would visit regularly.

It is said, one of the greatest hurts a parent can suffer is to outlive their child and so it was in Ahmads case; his parents were alive and generally healthy. They would spend as much time as they could with him as was possible, because like everyone else, they knew he would not be with them much longer. 

His attendances in hospital were becoming more and more frequent and each attendance had more to do with caring for the dying then for treating the sick. A few weeks earlier, staff watched as the female senior Consultant had to have that “conversation” with his parents and close loved ones. I am sure she struggled with it, as much as anyone would? How do you tell parents, that their son is going to die soon and it would be cruel to try and revive him by Cardiopulmonary resuscitation (CPR)?

Still it needed to be said, CPR was not like the movies or television, barely 18% survived to the point of discharge in hospital. When death was a certainty, by performing CPR, the nurses and doctors did manage to revive Ahmad, was it not just prolonging his suffering even more? 

The Consultant was an expert; she had carefully discussed it with them over many weeks. Her team would do their best to treat any illnesses and make sure Ahmad was comfortable to the end but he was not to be resuscitated if his heart stopped beating.

Initially his father understood, but his Mother struggled with the discussion, over the weeks she finally came around and would say ‘it was for the best’. Few of us can imagine how painful that conversation must have been for his parents. 

Still Ahmad was fighting on, he didn’t fully understand what was going you see..he was only three years old. He was born with an inherited genetic disorder, a rare condition, but that was more common in his family, because of several generations of cousin marriages. His condition meant his muscles were wasting away at an accelerated rate, to the extent that he could no longer breathe without support.

Tranquil, despite everything, Ahmad was a fighter that Friday he fought off his latest infection. By Saturday it was agreed by the senior Paediatrician that he could be discharged back home. Then suddenly that afternoon, his breathing increased rapidly as he struggled to clear his lungs, the nurse desperately tried to suction the secretions before the oxygen was slowly cut from him brain. The senior Paediatrician shouted for his mother, she rushed nearby..hesitated..and slumped in the nearby chair refusing to look at her son. The Doctor stopped the nurse for a second and picked up Ahmad, she carried him dragging his oxygen mask over to his Mother and said, ‘Mum your son is about to die, let his last sight and last touch in this world be yours’ and so Ahmads Mother held on to her three year old son for the last time. A moment later he died..and his Mother wept: to call it crying is perhaps understating it, it was in fact something more primal..not a cry, something closer to a howl. Despite all the forewarning and discussions, nothing prepared her for the inevitable.

This story is based on true events. British Pakistanis are 13 times more likely to have children with genetic disorders than the general population Modern day genetic testing could only screen for 40% of these conditions. If you would like more information on genetic conditions visit http://www.geneticalliance.org.uk/