Last year, the world was following the story of little Charlie Gard. Charlie was born seemingly healthy, but soon became seriously ill. He was diagnosed with a rare RRM2B mitochondrial depletion syndrome, and his parents, Connie Yates and Chris Gard, raised over $1.5 million for his care with the goal of taking him to the United States for experimental treatment. But the Great Ormond Street Hospital in London, where Charlie was receiving care, refused to release him, claiming the treatment would not be beneficial. This kicked off a months-long court battle, making its way all the way to the European Court of Human Appeals. And in ruling after ruling, Charlie’s parents lost their right to fight for their son’s life. He would be taken off of life support and robbed of the chance to receive experimental treatment, against their will. This was despite massive support from people around the world, with a Vatican hospital and the United States government offering to help the Gard family.
American specialist Dr. Michio Hirano was finally allowed to examine Charlie, and said he was suffering from muscle weakness, and that his experimental treatment could have helped… but the delay in getting him care had brought Charlie to “the point of no return,” according to Yates. In a final insult, Charlie’s parents were even denied the option of bringing Charlie home to die in peace. He passed away July 28, 2017, causing international outrage, anger, and heartbreak.
READ: Parents of Baby Dezmen, like Charlie Gard’s parents, fight for their son’s chance at life
Less than a year later, the case of Alfie Evans is again receiving international attention. According to a crowdfunding site set up by his parents, Alfie was born healthy, and for the first nine months of his life, grew well. But he wasn’t meeting milestones, and when he was awake, he seemed agitated. And they soon realized that he might be having seizures. “[H]e was doing a jerking movement with his hands, arms and legs and eyes would roll up,” they wrote. “He always had his hands clenched into a fist too.” But doctors weren’t able to make a diagnosis, and after Alfie came down with a chest infection, he was put on life support. While doctors said he wouldn’t make it past the new year, Alfie surprised them all. “[H]e managed to beat the infection and start breathing on his own. He came off the vent in March and was on cpap,” they wrote. “He was moving and trying to open his eyes!”
Another infection put Alfie back on the vent, and despite there being no actual diagnosis and the fact that his parents say Alfie is still showing signs of life, the hospital is now insisting that Alfie be taken off of life support… against his parents’ wishes. Alfie is said to be in a “semi-vegetative” state. But because doctors cannot make a definitive diagnosis, they say treatment is “futile,” and Alfie should therefore be killed. An Italian children’s hospital has volunteered to take Alfie in and treat him, but like Charlie before him, the hospital has refused to let him go.
Court battles have since ensued, and Alfie’s parents have lost every appeal. The European Court of Human Rights has refused to hear the case, and even though Alfie’s condition isn’t worsening, the fact that he may need to remain on a ventilator is evidently enough to sentence him to death. On Twitter, his parents have even accused the hospital of blackmailing them into removing life support sooner.
BLACKMAIL PURE AND SIMPLE.. Is this what has become of our nhs? not only do THEY decide to end our childrens lives they also blackmail into refusing our children cuddles (that they enjoy) in their last days until parents bend further to their demands. Disgraceful @Steven_Woolfe pic.twitter.com/X7fxq9l9JN
— #ALFIESARMY (@Alfiesarmy16) March 29, 2018
People have begun staging protests to save Alfie, and British lawmakers have joined the fight for him as well. Stephen Woolfe not only wrote letters to Prime Minister Theresa May and Secretary of State for Health and Social Care Jeremy Hunt, he dropped a bombshell in those letters: that NHS hospitals have previously refused to allow a child to receive treatment elsewhere, only for that treatment to be successful.
“There too, the hospital advised more effective treatment called proton beam therapy available in Spain would not help the child and refused permission for the child to be transferred to Spain, instead advising for Aysha to undergo chemotherapy and radiotherapy,” he wrote. “Fearing such treatment would leave him badly brain damaged, his parents travelled to Malaga with Aysha. Three years later, Ashya King has now been cleared of cancer.”
Videos also show Alfie doing things the hospital says he cannot do, such as suck and swallow:
Ye another video of Alfie sucking his dummy and spitting it out..and showing he swallows..all things hospital stated he cant do..this too was filmed today 27/3/18 somebody please listen that parents know best.. #SaveAlfieEvans pic.twitter.com/SA8sRsG7t8
— #ALFIESARMY (@Alfiesarmy16) March 27, 2018
Alfie’s parents have raised over $120,000 for his care. There is no reason that his parents should not be allowed to seek alternative treatment elsewhere. But like with Charlie Gard, the medical bureaucracy is deciding whether or not a child should be allowed to have a chance at life. Do parents have the right to determine medical treatment for their own children? Does life have a price tag?
What is happening increasingly frequently in the United Kingdom indicates disturbing answers to those questions.