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UPDATE: April 25 — Alfie’s father, Tom Evans, told the media that the hospital is now feeding his son after 28 hours without food. “They only started feeding him at one ‘o’clock yesterday,” Evans said. “It’s disgusting how he’s being treated.” Evans also said there will be an appeal heard in court today: “The court of appeal have reached out to us and said they are going to set back three judges to hear the case. … In reality he could be in Italy right now. We all know the military air force are ready to take him and a team of doctors are there. We’ve also got a German air ambulance team, who attempted to take him in the first place, ready … the reality is these people are eager to get him out of the country and I’m not giving up because Alfie’s breathing away, he’s not suffering.”
UPDATE: April 24 — A British court has ruled that Alfie may not be taken to Italy, despite the facts that Alfie is now an Italian citizen and that an air ambulance from Italy has been waiting to take him for hours. Alfie’s father has posted to Facebook: “Coming up to 24 hours and he’s fighting with gorgeous his gorgeous features, pink lips, handsome grown up face, and odd cheeky smile now and again. UPDATE: HE HAS NOW BEEN STARVED FROM NUTRITION FOR 23 hours[. H]ow is this HUMANE where does his DIGNITY LIE[?]”
On April 23, 2018, Alder Hey hospital removed Alfie Evans’ life support, against his parents’ wishes, because it was believed that any treatment for him would be futile. The toddler has been fighting for his life since suffering a cascade of medical crises, starting at nine months old when he began having seizures. A chest infection landed him on life support, and he was able to recover, but another infection put him back on life support again. It is believed that Alfie has encephalomyopathic mitochondrial DNA depletion syndrome, for which there is no cure. But Alfie’s parents insist that he has not received a specific diagnosis, and that because there is no diagnosis, doctors feel that attempting to treat him would be pointless. After a series of court battles, the hospital won the right to end Alfie’s life.
But Alfie ended up shocking everyone. After his life support was removed, he didn’t quickly die as expected. Instead, he began breathing on his own and sustained his own life. After over two hours had passed, Alfie’s father posted updates on social media, slamming the hospital for refusing to give Alfie oxygen. But now, as Alfie has continued breathing on his own for over 19 hours, the hospital has finally caved and allowed him to have oxygen and water.
Now, Alfie’s parents have been granted an emergency hearing, during which they will request that the order preventing his removal from Alder Hey be lifted. Alfie has been granted Italian citizenship, with multiple hospitals in the country willing to take him in for treatment. Air ambulances have also been dispatched and are on standby to transport him to Italy if the order is lifted. “We are asking to lift all orders preventing Alfie from leaving Alder Hey and allow him to go to Italy. There’s medical transportation ready at any moment to take him,” Alfie’s father, Tom Evans, said. “Everything is in place. We have no doubt that he would survive the trip. He would have full treatment, oxygen and everything, right to Italy. It’s in his best interests to get treatment at a hospital abroad.”
If the order is not lifted, Alfie will likely be forced to endure an inhumane death. According to Alfie’s father, Alfie will be given Midazolam and Fentanyl to hasten his death. A document from Evans states that “[w]ith regard to the process of withdrawal of ventilation from Alfie, the Trust proposes that … a cannula will be placed in situ and infusions of Midazolam (an anxiolytic) and Fentanyl (an analgaesic) will be prepared. They would be commenced and increased to control symptoms if necessary.” It’s not clear whether or not Alfie has already received these drugs, but the use of Midazolam is especially controversial, as it has been banned for usage in executions.
Alfie is being treated less humanely than we treat prisoners on death row… or even animals. And why? Because he very well may be a severely disabled child for the rest of his life. He may not improve. And his life, therefore, is not considered worth living to the United Kingdom and to the NHS. It seems the hospital and the courts believe that Alfie will cost too much and take up too many resources, so they would rather force him to be put to death and spare taxpayers’ wallets. (Video below is from one week ago.) It’s despicable and horrifying that such a thing could happen not once, but twice.
Charlie Gard died last year after diagnosed with a rare RRM2B mitochondrial depletion syndrome. His parents raised $1.5 million for his care, and they wanted to take him to the United States for experimental treatment. Staff at the Great Ormond Street Hospital in London refused, prompting court battles that went all the way to the European Court of Human Appeals. But Charlie’s parents lost every single hearing, even though there was a neurologist, Dr. Michio Hirano, willing to help him, along with multiple foreign hospitals. When Dr. Hirano was finally able to examine Charlie, he declared that Charlie’s condition could have been ameliorated… but that by now, it was too late. The hospital’s dithering had cost Charlie his life. Once Charlie’s parents then agreed to remove life support, the hospital then gave them one final slap in the face, refusing to let them bring Charlie home to die.
How many more children will this happen to? It’s a terrifying thought for parents throughout the United Kingdom, who evidently have to be afraid of taking their children to the hospital, because if by some terrible circumstance those children end up fighting for their lives on life support, there’s no guarantee that parents will be allowed to choose for themselves a course of action, or whether or not their children live or die.
If there is any justice in the world, Alfie will be allowed to take the air ambulance that has been dispatched for him and receive care in Italy. That he is breathing on his own, and has been for so long, proves that Alfie is not brain dead. He is, at worst, severely disabled — and that does not mean he does not have the right to life.”