Charlie Gard: What if they’re just wrong?

A brain scan showing large areas affected by necrosis after a stroke.The case of Charlie Gard, the baby boy with a mitochondrial disease and allegedly irreparable brain damage whose life support doctors have been trying to turn off as they believe there is no hope of his recovering, has been in the news for the past several weeks as it has gone to the European Court of Human Rights, which ruled against him, and now back to the British High Court where lawyers are representing his family pro bono. I’ve not followed that case particularly closely but I have been following the case of Emily Bauer, a young woman from Texas who suffered brain damage in 2012 after taking ‘Kush’ (also known as ‘spice’ and ‘K2’), a kind of synthetic marijuana which is available from some corner shops and filling stations and sold as “legal highs” or “pot pourri”. After she suffered a series of strokes, scans showed large areas of her brain affected by “liquefactive necrosis”, i.e. which were dead, and it was believed that if her life support were switched off, she would die.

They did switch them off and Emily Bauer is still alive 3 1/2 years later; she has some visual, cognitive and physical impairment — she still relies on a wheelchair and needs help doing personal care — but she has made progress far in excess of what doctors thought she was capable of in December 2012. Emily and her family have, since Emily’s injury, been campaigning for awareness of and legislation against the sale of synthetic marijuana and featured stories about police raids, prosecutions and other deaths connected to the drug (they are on Facebook here). Her doctors now say that her recovery is a miracle and that she is achieving things that “should not be possible”. The damage cannot be repaired, but “new pathways can be created to go around the dead areas”.

The situation may well not be comparable to Charlie Gard’s, but in that case as in this, doctors thought she was beyond saving and advised her parents to allow them to switch off her life support, which they did; there was no sense on either side that Emily had a life, and everyone was surprised when she survived having the life support switched off. Charlie Gard’s parents do not accept this and are willing to take up whatever treatment anyone suggests might offer him a life beyond the walls of a London hospital. There are some American ‘doctors’ with glossy publicity and apparently state-of-the-art facilities offering such things as cures for cancer which have no benefit, but the doctor who is expected to examine baby Charlie next week is a neurologist from the Columbia University Medical Center in New York, not a quack in the Burzynski mould, and believes there is between an 11% and 56% chance of “clinically meaningful improvement”.

We need to beware of accepting the doctors’ authority argument in such cases. Doctors have been known to be wrong, but sometimes egregiously so, with terrible (and sometimes lethal) consequences for a patient who cannot defend him- or herself. Some are wedded to pet theories (especially around physical symptoms being psychological in origin, and mitochondrial disease is often the disputed diagnosis in such cases, as in the case of Justina Pelletier, who was held in a psychiatric ward at Boston Children’s Hospital for more than a year after doctors there disputed a diagnosis from her local hospital in Connecticut) and others will make decisions on self-centred grounds. Liberal ‘rationalists’ in both this country and the US have a history of siding with doctors in such situations, while the “pro-life” Right support those trying to keep the patient alive, as we first saw in the case of Terri Schiavo. So I’m not joining those saying “just let the poor kid die”; if reputable doctors believe they can offer him an improvement in his condition, we should let them.

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