The Alfie Dilemma

Since the beginning of time, a parent has had a say in how their children have been raised, from what they have been exposed to, what they have learned, who they have associated with, how they are educated and even how they dress. In recent decades there has been a struggle that has received a significant amount of attention that has caused an effect on how we parent our children. The struggle between the parent and physician, including subjects such as vaccines to homeschooling sometimes making headlines here in America, but in other parts of the world like the UK there is a different kind of battle taking the headlines by storm, in particular who decides the fate of a terminally ill child, the physician or the parent, and does the government have the right to intervene when neither agrees on a course of action. In one recent case, the case of Baby Alfie which made world headlines recently, when both the parents and Alder Hey Children Hospital in West Derby, Liverpool, England, could not come to an agreement on the future care of Alfie Evans born May 9, 2016, to parents Tom and Kate. “Alfie, age 23 months, has been in Alder Hey Hospital, Liverpool, since December 2016 with an undiagnosed degenerative neurological condition. The hospital wanted to remove his life support but his parents, Tom Evans and Kate James, fought through the courts for treatment to continue in the UK or Rome” Kenber, B., & Swerling, G. (2018, APR 25).

This neuro-degenerative disease, that was attacking the white matter in baby Alfie’s brain and had left him in a comatose state. This, however, is not the first time the courts have intervened when it came to parents right to decide when the fight for their child’s life has come to its end, two previous cases Charlie Gard and Isaiah Haastrup also made headlines when “President Trump weighed in, the courts ruled that life support could be withdrawn from another baby, Charlie Gard and that his parents could not take him to the United States for experimental treatment. Early this year, the similar case of still, another baby, Isaiah Haastrup, drew intense attention.” Perez-Pena, R (2018, April 27). The stories which are similar in regard that other countries offered help and treatment, in the case Alfie Italy had even granted the child citizenship so he could be treated by and flown to the country where palliative care would be rendered and a surgery that would prolong his life. The Hospitals Case The hospital which has undergone severe scrutiny involving the case concerning baby Alfie is Alder Hey children’s hospital and is England’s top children’s hospital. So why couldn’t they treat Alfie Evans if they are the top leading hospital? Alfie suffers from a rare diagnosis that provides no cure and may paradoxically be the first of its kind “The fact is, doctors even until now do not know what condition Alfie has, despite suggestions it could be linked to a mitochondrial disease.

All we know is he has a progressive neurodegenerative disease associated with severe epilepsy. Sadly, the vast majority of neuro-degenerative diseases are irreversible and have no treatment or cure, despite the fact no symptoms appear until well after the child is born. The vast majority of white matter in Alfie’s brain has been wiped out. His vital nerve issue is all but destroyed at this point. He is therefore without, or close to losing, the abilities to eat, smile, communicate, swallow and breathe’’ Olivia Waring (Wednesday 25 APR 2018 11:25 am). So, it seems as from a medical point of view the benefits of withdrawing the child from his life support outweighed his long-term and current conditions and his future suffering and were from their perspective, the court ultimately agreed with Alder Hey “Yesterday in London Mr. Justice Hayden ruled in favor of the hospital after a hearing in the Family Division of the High Court in Liverpool earlier this month. He said he accepted medical evidence that showed further treatment was futile, adding that he had reached his conclusion with great sadness. The judge said that while doctors agreed that Alfie had a degenerative neurological disorder, there was no specific diagnosis, and ‘in fact, there may never be.’ ‘Alfie’s need now is for good quality palliative care,’ he said. ‘He requires peace, quiet and privacy in order that he may conclude his life as he has lived it, with dignity.’ Swerling, G. (2018, FEB 21).

The Parents As a parent I can bear the pain of both Tom and Kate, there is nothing more agonizing than feeling helpless trying to make one of your children feel better when they are ill or in pain. In this case, their baby, a few months old had barely begun to live his life only to fall ill and be told that he would not live his full life. That they would never take him to the park again, they would not once witness him, perform his initial step or utter his first words. I couldn’t imagine how that must have felt for them at the time. I would search every corner of the world to find any and all help available and they did, help was offered by the Italian Government, but the question this posed was is this in the best interest of the child or for the parent’s inevitable acceptance of the facts? The support for the parents right to decide when enough was enough gained so much attention that a group named “Alfie’s Army” stood round the clock vigil at the hospital in support of Tom and Kate. The Catholic Pope weighed in by stating ‘It is my sincere hope that everything necessary may be done in order to continue compassionately accompanying little Alfie Evans and that the deep suffering of his parents may be heard.

I am praying for Alfie, for his family and for all who are involved.’ Holly Christodoulou, Phoebe Cooke, Jay Akbar, Danny De Vaal and Erica Doyle Higgins (1st May 2018), Italy went to great lengths granting Alfie citizenship in the country, but the courts denied them this request, so the family appealed to a higher court and were once again denied, Lady Justice King said the evidence was that ‘tragically, everything that would allow him to have some appreciation of life or even the mere touch of his mother, has been destroyed irrevocably” Gibb, Frances (26 APR 2018: 20), But should a parent be told when to give up? Should they not have the right to continue to fight even when no hope is available? Should you be forced to provide things like vaccines when they go against your beliefs? According to UK law, only the court can decide these matters when doctors and parents do not see eye to eye on the prognosis. The Government As mentioned at the beginning of the paper there have been many court cases here in the United States concerning child care some involving issues like vaccinations, but when it comes to life-saving treatments or care should or should not the government step in and declare to a parent what they should or shouldn’t do in life or death situations? Alfie Evans is not the first case of its kind “in Britain, rulings like those in Alfie’s case date to at least the early 1990s, and there have been more than 20 of them in the past decade, said Dominic Wilkinson, a professor of medical ethics at the University of Oxford.” Perez-Pena, R (2018, April 27).

The decision in the Alfie case came after several months of legal battles in the UK “The hospital where Alfie was treated said his scans showed ‘catastrophic degradation of his brain tissue’ and that further treatment was not only ‘futile’ but also ‘unkind and inhumane,’ according to the BBC. His parents waged a four-month long battle in the British court system that went to the Court of Appeal, Supreme Court and European Court of Human Rights.” Bailey, S. P. (2018, April 28). The courts had a hard choice or decision to make and seem to take all the facts into consideration like the fluid that was continually filling the child’s brain, the fact that no cure was available, and doctors from other countries could not cure Alfie only prolong his life, so would prolonging his life be the right thing to do? The judges did not agree. Conclusion There is no doubt that a parent’s love is unconditional and that parents will explore all they can when it comes to the health of their children. In Alfie’s case, his parents cherished him enough to keep fighting for him as long as he kept fighting.

The doctors, however, felt that the suffering he was enduring and the diagnosis of his condition were unchangeable Alfie should not need to suffer any more treatment. The government felt that both parties had the best interest of the child at heart but that the negative consequences of Alfie’s condition outweighed the emotional state of the parents and sided with doctors “British law states that parents’ cannot demand a particular treatment to be continued where the burdens of the treatment clearly outweigh the benefits for the child,’ Agence France-Presse reported. If an agreement cannot be reached between the parents and doctors, ‘a court should be asked to make a declaration about whether the provision of life-sustaining treatment would benefit the child.’ In Alfie’s cases, judges sided with doctors each time.” Bailey, S. P (2018, April 28). On Saturday, April 28th, 2018 Alfie Evans life and battle came to an end 5 days after being removed from life support for five days Alfie fought as hard as he could to stay alive, the hospital has received harsh criticism over the issue while staff had been harassed and at times threatened “Kate James and Tom Evans, both aged in their early twenties, had enlisted the support of the Pope in their legal battle but ultimately lost when High Court judges ruled in favor of medical staff at Alder Hey Children’s Hospital in Liverpool. They announced the news on Saturday saying that they were ‘heartbroken’ to say that their son had ‘gained his wings at 2:30 am’. Following the tragic news of the tot’s death, the Pope tweeted saying: ‘I am deeply moved by the death of little Alfie, Today I pray especially for his parents, as God the Father receives him in his tender embrace.’ CHAPLAIN, C (2018, April 28).