by Stephanie Hauer
Alfie Evans was a two year old who defied medical expectations. He was born on May 9, 2016 in England. When he was seven months old, he began experiencing seizures and was admitted to the hospital. He was diagnosed with an unspecified degenerative neurological condition. He was put on a ventilator and was kept in the hospital on life support systems for over a year.
Alfie’s parents, Tom and Kate, understood that Alfie was not likely to ever improve or function at full independence. However, they chose to love and care for him regardless of his physical state. So when the Alder Hay Children’s Hospital where Alfie was staying decided to take him off of life-support, Tom and Kate fought back. They legally challenged the hospital in February of 2018, and when that failed, they requested an additional hearing in April of 2018. The High Court judge decided that Alfie may be brought to his own home, but he could not be transferred to a different hospital. Pope Francis took interest in the case and offered Italian citizenship to the child along with a medical helicopter on call ready to fly him to the Vatican children’s hospital for additional treatment. Despite these offers, the hospital and judge decided that it was “not in Alfie’s best interests to continue his care.”
The doctors had predicted that Alfie would live for only a few minutes without the ventilator. Once his life support was removed, however, Alfie breathed independently. He was given oxygen, which would make make sure his body got enough oxygen but would not affect his breathing patterns. However, because his medical team did not expect him to live very long, they neglected to give him food or water for the entirety of his first day off life support. His father Tom Evans is quoted as saying, “They don’t want to see him come out of it, they want him to die, they want him to deteriorate in the next couple of hours so then they can say ‘oh look we told you,’ but in fact in reality I stood in the court case and they told me he wouldn’t last longer than five minutes, he’s lasted 22 hours.” This active starvation was a transparent attempt at euthanasia of the young boy.
He was eventually given nutrition and hydration; however tragically, Alfie passed away on April 28 2018 after five days of breathing on his own. Tom Evans announced the news on Facebook by saying, “My gladiator lay down his shield and gained his wings... absolutely heartbroken.” People around the world who had been watching his story grieved along with his parents. Hundreds of supporters released balloons outside the hospital to show visible support to Alfie’s family.
This story is not entirely unprecedented. Charlie Gard, an 11-month-old baby, died in 2017 when his life support was switched off. He had a rare genetic disorder called MDDS that led to severe muscle and organ damage. He was slated to receive experimental treatment, but the hospital he was staying at prevented his relocation at the last minute. Despite his parents’ pleading, his life support was turned off and any further care was denied. He died in hospice care after a few hours.
In both instances, the actions of the hospital administrators and judges involved in the situation sent a particular and clear message to the children at risk. They said, “You are not important. You are not worth fighting for. You are not worth resources or care. You do not deserve medical treatment because you are not valued.”
That message is deplorable, and it is untrue. Perhaps they thought that they were doing the best thing for the children but they failed to see how their perceptions were clouded with ableist misconceptions of life with a degenerative condition. The reality is that both Alfie and Charlie, and every other person on this planet, is important. You are worth fighting for. You deserve resources, care, and medical treatment. You are worthy. You have inherent dignity that can never be taken away or lessened.
When we see judges and hospitals trying to deny that dignity in others, it hurts our entire community. We must fight against these injustices wherever we find them.