You and your spouse become proud parents to a healthy boy in May 2016. Later that year, your child begins experiencing epileptic seizures. You take your child to Alder Hey Children’s Hospital in Liverpool, England. The seizures are inexplicable, and you find that your baby has a rare terminal neurodegenerative condition. He’s kept on life support at the hospital, experiencing serious brain deterioration.

In April 2018, the doctors advocate to take your child off of life support and allow him to pass away. You and your spouse have other intentions to transfer him elsewhere, but the British courts aren’t on your side. After ventilatory support is removed on April 23, your baby continues to breathe despite several negative predictions made by hospital staff. Many protests later, he passes away at 2:30 a.m. on April 28.

This narrative describes the events that occurred to Tom Evans and Kate James, the proud parents of a boy named Alfie Evans. Their complaints ignited a movement that criticized England’s healthcare system, including the moral dilemma on how much authority a parent has over his or her hospitalized child.  

Healthcare in the UK operates under the National Health Service — a publicly funded system that uses taxpayer money to support healthcare providers nationwide. In most cases, an English resident can receive treatment free of cost. These economic characteristics leave little room for freedom of choice in extreme cases; the decisions concerning the location of Alfie’s care were out of his parents’ control.  

One should understand this is an extreme case, as Alfie’s condition was incurable; however, his parents had every right to try everything possible. When the government restricted his parents from seeking treatment elsewhere, the decision was based on good intentions for Alfie but neglected the interests of his parents.

When two parents bring a child into the world, they should have the right to present him or her with the best opportunities. Keeping Alfie in one location had many implications when continuous care was offered in several locations across the globe. 

The New York Times showed that government officials in Poland, the United States and Italy expressed support toward Alfie. Pope Francis’ support contributed to a national offer to grant Alfie Italian citizenship. Additionally, Bambino Gesu Hospital in the Vatican City was prepared to administer healthcare if the British government allowed it.  

Moved by the prayers and immense solidarity shown little Alfie Evans, I renew my appeal that the suffering of his parents may be heard and that their desire to seek new forms of treatment may be granted.

— Pope Francis (@Pontifex) April 23, 2018

When the guardians of a hospitalized child disagree with the doctors in the UK, the courts make a decision. All of the courts involved, including the European Court of Human Rights, supported the original decision to keep Alfie Evans in Alder Hey and remove life support.

Alfie’s semi-vegetative condition was undiagnosed, and this raised concerns that made his parents’ outcries understandable. It was not entirely proven if Alfie could feel pain as most of his brain was affected, including the tissue associated with the five senses.

As for the expensive care that Alfie required, the parents asserted the NHS’s financial support was not necessary; their wish was to seek a home care plan or transport Alfie to another hospital willing to continue treatment for as long as possible.  

These desires originated from the fundamental nature of a parent. Jenni Russell wrote in The Times: “There may be no cure, but a family must be able to choose where their son spends his last days.” Hospitals in England that experience similar cases should consider these concepts.

Tom Evans and Kate James stood by their son for almost two years while he became a symbol of movements across the world, but it’s not really about that. Their dedication is an admirable example of how a family should act: never giving up on one another in the face of tragedy.

Thomas is a Freshman in LAS.

[email protected]