Each week, patients from across Europe are wheeled in to the Coma Science Group in Liège. Though the nature of their head injuries is almost as individual as the patients themselves, they are united by having close family with them who are caught between grief, hope and desperation as they try to find out more about the plight of their loved one.
Among them is Leila Brel. The motivation for her visit dates back to the day that her brother Jamel had been put under unbearable stress. The 41-year-old construction worker had separated from his partner and six children and was unable to work because he had hurt his hand in an accident. He was about to go back home after visiting his estranged family in November of 2012 and, as his children pleaded with him to stay, he suffered a cardiac arrest. “He was dead for 35 minutes,” says Leila.
Local doctors delivered a stark verdict. They argued that it was a waste of taxpayers’ money trying to investigate whether Jamel had any residual consciousness. He would die anyway. And even if he didn’t, he “would be nothing”, Leila said. After months of arguments with the doctors, his parents took him home to care for him in February of 2013. As they took care of him, his family became convinced Jamel had a glimmer of awareness.
Leila described how her brother could still respond to her. When she tried to turn or dress him and found that he was too stiff, he would relax when she asked. He would react if brushed by a nurse who was giving him an injection. When touched unexpectedly, “he would jump”. During meal times, Leila was struck by how Jamel would spit out the Chantilly cream she had fed him but, when it came to coffee cream, he “would smile and play with it in his mouth”. She became convinced that he was by no means neurovegetative, as the doctors had concluded. “I would speak to him quite a lot.”
Her spirits lifted when Jamel was seen by a doctor in Lyon who ran a mobile clinic dedicated to improving the lives of minimally conscious and vegetative patients. He also questioned the diagnosis and told the family about the work done by the Liège team. Emboldened, Jamel’s family now wanted to find out if his brain was working. After rejections by other French hospitals, the family decided to send Jamel to the Coma Science Clinic for a full investigation. As he underwent a series of scans and tests, Leila was at his side, along with his brother Karim and a friend, Said.
A few weeks later, Steven Laureys delivered the results to the family. The scans had revealed that Jamel’s brain is damaged, shrunken and surrounded by fluid. The only active, working regions, highlighted by reds and oranges in the scans, appeared to be his emotional centres. But he moved too much for the tennis test. There were no signs of consciousness, or conscious awareness or emotion, and Jamel appeared to be vegetative. However, the Liège team did give the family amantadine to see if it would have an effect, even though it is usually only offered to minimally conscious patients. Because he had been in this state for almost a year, the chances of recovery were low.
The family took the news badly. Leila says they were expecting a more optimistic result. Nor were they convinced. After all, Jamel was tired, after being moved from hospitals in France to Liège, travelling 7 hours in an ambulance, and was recovering from surgery on his mouth. They have not given up hope: once he is fully rested, they say they will gather evidence to persuade Laureys, such as video of Jamel’s behaviour in the familiar surroundings of home. Leila says that they are sure that Jamel can hear what they are saying. He still smiles from time to time.