His name was Alfie Evans, a 24-month-old baby who died in the UK on Saturday.
Though his life was mercilessly short, Alfie was at the center of a heart-wrenching debate over who should have final authority over a child’s medical care: the parents, or the state.
And at what point does medical care cross the line into medical kidnapping? Did that happen here?
Let’s give it a Reality Check you won’t get anywhere else.
Little Alfie Evans passed away this past weekend. The story of his struggle, of his life and ultimately his death has raised a huge debate over the issue of the right to life, and the right to fight for life.
Here’s the backstory: Alfie was born May 9, 2016 to Tom Evans and Kate James. But as early as July 2016, Alfie’s health began to deteriorate. He was brought into the pediatric unit at Alder Hey Hospital in December 2016, where, over the course of a year, he suffered seizures, bilateral pneumonia, and cardiac complications that put Alfie into a coma by January of this year.
According to (Quartz) Qz.com, “Alfie’s doctors decided that continuing to keep the boy on ventilatory support was not in his best interest, concluding that he had an untreatable, progressive neuro-degenerative disease of unknown origin. Typically, in the UK, doctors in a similar position use private mediation to agree upon a course of action with family members. But Alfie’s parents did not accept the doctors’ conclusion, arguing that the hospital had rushed to judgment. In later court hearings, they said they felt the hospital had ‘given up’ on Alfie. And so the hospital turned to the family division of the UK’s high court for a ruling.”
But the UK high court ruled against them, deciding that life support, “compromises Alfie’s future dignity.”
His parents filed an appeal, but it was denied in march, so they took the case to the European Court of Human Rights. There, the appeal was deemed inadmissible.
As this was all happening the story grew. Large groups of Christian, specifically Catholic, supporters began rallying around Alfie. They were called Alfie’s Army. Even the pope himself got involved.
In fact, the pope’s support prompted the Italian government last week, to grant Alfie Italian citizenship so that he could have “immediate transfer to Italy” for new treatment.
And this is where the story become outrageous. Alder Hey Hospital refused to allow Alfie to be transferred. They determined continuing treatment was “not in Alfie’s best interests.”
Alder Hey Hospital said scans showed “catastrophic degradation of his brain tissue” and that further treatment was not only “futile” but also “unkind and inhumane.”
So to be clear, Alder Hey Hospital decided that they would no longer treat Alfie, that he would be removed from life saving ventilation. But they also determined that no one else would be allowed to treat him. No other hospital, no other doctors. No one.
And despite the Italian citizenship being granted, the UK Court of Appeals blocked that, but upholding a ruling preventing the toddler from traveling abroad after life support was withdrawn.
Why would the high courts do this, especially when Alder Hey Hospital has such a troubling history?
According to The Guardian, back in 2001 the hospital admitted to taking organs from live children, and selling them to a pharmaceutical company in exchange for cash.
“Just days before the publication of a report on the removal and storage of hundreds of children’s organs at Alder Hey without parents’ knowledge, it emerged that supplies of the thymus gland, which is routinely removed during cardiac surgery to give better access to the heart, were regularly handed over to the pharmaceutical company Aventis Pasteur, in exchange for cash donations to the hospital.”
On Monday, April 23, the doctors at Alder Hey took Alfie off life support, against his parents’ wishes.
Again, from Quartz (Qz.com), “Most expected that he would not be able to keep breathing on his own. Defying expectations, he did. He survived several hours without assistance, after which doctors began giving him oxygen and hydration to help him breathe.”
On Saturday, April 28, Alfie passed away. The pope tweeted, “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.”
What you need to know is that under UK law, when doctors and parents disagree about the best course of action in a child’s medical care, the final decision is made through the court systems.
This law was created to protect children. But in this case, it didn’t protect Alfie Evans.
Reality check here: it is arguably the height of arrogance for a medical staff to say it can do nothing to help a child’s condition and yet to simultaneously block any other medical staff, any other doctor from being allowed to try.
The right to try, the right to fight for life, the right to hope, were taken from Alfie’s family in the name of being humane. And yet so many can clearly see there is nothing humane about that.