Alfie Evans’ Parents Fight for His Life
Please keep these young parents in your prayers as they fight for the life and dignity of their son.
As the case of baby Charlie Gard was being played out in the U.K. legal system and across the world’s media, parents of other seriously ill infants were watching with dismay and distress, hoping and praying that their babies would not meet the same fate.
Among them was Tom Evans and Kate James, whose little boy, Alfie Evans, was also connected to a life support machine while medics attempted to determine the best course of action.
They are keen to downplay the similarities between their case and that of little Charlie, not least out of respect for his parents who are still grieving and facing their first Christmas without their child. The crucial difference between Alfie Evans and Charlie Gard is that that Charlie had a diagnosis, a rare form of mitochondrial disease for which there was no proven treatment.
Alfie does not have any diagnosis, without which it is impossible to predict his chances of survival, let alone his quality of life. Nonetheless, lawyers from the scandal-beset Alder Hey Children’s Hospital, where Alfie is being treated, have applied to the High Court for permission to withdraw him from life support, claiming that “it is no longer in Alfie’s best interests to be provided with mechanical ventilation and it would be best for him to withdraw ventilation and allow him to die in a peaceful and dignified manner.”
Alfie appeared to be in perfect health when he was born in May 2016, initially growing and feeding well. He began to miss various development milestones and began to experience jerking movements where his hands would roll into a fist and his eyes would roll. They took him to the doctor to express their concerns on three separate occasions, and were told that Alfie was simply ‘lazy’ and a ‘late developer.’
The jerking movements increased in number until December 2016 when he contracted a chest infection, which led to Alfie having a myoclonic jerking spasm and struggling to breathe. He was then put on a ventilator and his parents were told to prepare for the worst, whereupon they had their little boy baptized.
Alfie obviously had other ideas, however. He overcame his infection, began breathing independently and moving. He attempted to open his eyes but then caught another infection, leading to him being put once again on life support, in January 2017, where he has remained ever since.
Alder Hey claims that Alfie is insensate and is unaware of any stimulus or irritation. Many videos and photographs on Alfie’s official Facebook page call this diagnosis into question. Alfie is pictured opening his eyes when his mother picks him up for a cuddle, and in one recent video taken at the beginning of December 2017, appears to open his eyes in response to his father’s coaxing. Other videos show him yawning and stretching. One independent ICU doctor who has examined video footage of Alfie supposedly having a seizure noted that it ‘would be difficult to classify that as seizures’ and said that ‘what it rather looks like is a baby trying to look at his father in response to hearing his voice.’
Alfie’s parents contend that he is in a coma thanks to the high levels of sedation he has been given in order to manage his seizures. They question why the doctors have not considered a tracheostomy in 11 months, which would enable him to breathe without the need for intubation and would also mean that the level of sedation could be reduced. An early tracheostomy for critically ill patients requiring intubation is associated with lower mortality and complication rates (such as reduced trauma to the oropharynx and larynx) and a shorter stay in ICU.
Intubation is never intended as a long-term treatment, and arguably were Alfie to have been given a tracheostomy there is a chance that he may even have been able to return home with a care package in place. Currently Alfie is on a number of anti-convulsant drugs which sedate him and have the effect of respiratory depression, making him more dependent on his ventilator. Some of these drugs interact with each other, thereby increasing the effect. An early tracheotomy could have broken this cycle.
Filippo Martini, a lawyer from the Italian association, Giuristi per la Vita (“Jurists for Life”) who is acting for Alfie in Italy has this to say:
There is no diagnosis. There are some ideas and possible links to serious neurological diseases with epileptic seizures. However, this does not allow for premature statements to be made saying that ‘Alfie has no hope’ since there is no scientific evidence to back it up. The fact is that right now, considering his current conditions it is impossible to predict the little boy's life expectancy. How much time does he have? Two months? Two years? Nobody is saying it and nobody can. According to Alder Hey, Alfie should have died months ago. It’s impossible to know whether scientific research will develop suitable ways in the near future to understand what his disease is and find out what process needs to be activated in order to reverse and cure it. What Alfie certainly needs is love and care.
One certainly can’t blame Alfie’s parents for wondering whether or not the hospital ever really intended to save their little boy. Having never raised the topic of a tracheostomy in six months, Alder Hey then informed Tom and Kate in June 2017 that they would need to obtain lawyers. Indeed, the hospital appear to have played a well-timed game, filing court papers before informing his parents and seemingly skipping the required pre-litigation mediation phase, where both parties attempt to come to mutual agreement. They have also appointed the legal firm Hill Dickinson to provide a guardian for Alfie. One of the solicitors from Hill Dickinson wrote here in support of legal rights being stripped from parents who, he claims, are unable to exercise the requisite objectivity in terms of determining the best interests of a child and that medical professionals should not be obliged to provide a treatment which is futile.
Kate James and Tom Evans hail from a similarly working-class blue-collar background to that of Charlie Gard’s parents and are also very young, having been fighting for their son since the age of 18. Keen to stay on the right side of the hospital, they have behaved impeccably, obeying Alder Hey’s requests that they act with due discretion and maintained a total media silence over their son. The hospital therefore caught them by surprise when they filed with the court and informed the local press, after which the national media ran with the story. Even now on social media, Alfie’s dad repeatedly urges Alfie’s supporters not to engage in any abuse of the staff at Alder Hey.
Alfie’s dad Tom is a baptized Catholic, but as yet there have been no words from the Pope or offers of help from Donald Trump, much to the relief of Alder Hey.
A number of European hospitals have assessed Alfie’s case notes and agreed to admit him, but once again the British medical authorities are refusing permission for such a transfer to take place, stating that the transfer “is not without risks.” Alfie’s team claim that the risks are “absolutely minimal and entirely controllable thanks to current ultramodern transport techniques” adding that they have contacted three specialized medical transfer companies which would be ready for the transfer with only a couple of days’ notice. The Register has seen a certificate signed by one of these companies, which not only certifies that Alfie is ready to fly, having been examined by one of their senior medics, but also notes that Alfie responses to voices. What is certain is that if he remains in England then Alfie faces a death sentence.
It ought to be accepted without question that in the absence of abuse or serious neglect, the family are automatically the most qualified to judge what is in their child’s best interests, precisely because they have skin in the game. No loving parent would want to artificially prolong the life of a child who was suffering and like the parents of Charlie Gard, Tom Evans and Kate James know that their son is likely to experience some form of disability if he survives, but they still want to give him the chance of life, treasuring every day they have with him.
Alder Hey’s position is that death would be a better option for Alfie than his remaining cognitively disabled until such time that his condition can be identified and treated. It seems to be all about a battle for control.
One wonders whether or not the case of Charlie Gard has bolstered the confidence of medical professionals who believe that they, not the parents, ought to have the final say when determining decisions of life and death regarding a child. It certainly feels as though the treatment of Charlie, who was not even allowed to die according to his parents’ wishes, was meant to set an example to other parents who may be thinking of challenging the authorities.
The full hearing at the High Court to appoint a guardian for Alfie Evans, which would effectively strip his parents of their rights, takes place in early January. An online petition can be found here and a fund has been established to financially support Alfie and his family. Please keep these young parents in your prayers as they fight for the life and dignity of their own precious baby.