Babies Die After Doctors Remove Life Support Against Parents’ Wishes

Sharolyn Smith

Political Director

Alfie Evans, a 23-month-old who had a rare neurological disorder, died in April after lingering for five days after a British hospital removed his life support. Alder Hey Children’s Hospital in Liverpool, England removed Alfie’s life support over the objections of his parents following an extensive legal battle that garnered international attention. After several appeals court judges and a high court judge ruled against them, Alfie’s parents appealed to the Supreme Court of the United Kingdom. That court ruled that the hospital be allowed to proceed with its decision to discontinue life support. The European Court of Human Rights refused to hear the case. There will be no investigation or autopsy following Alfie’s death.

Pope Francis brought worldwide attention to Alfie’s situation by tweeting, “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.” Italy granted citizenship to Alfie and Bambino Gesu Hospital in Rome offered to provide medical care and treatment and explore experimental treatments. There was even an air ambulance on standby to take Alfie to Rome. However, British courts prevented Alfie’s parents from taking him there.

Alfie’s father, Tom Evans, explained, “Our child is sick, but not dying, and does not deserve to die. He is not terminally ill nor diagnosed. We have been trying our best to find out his condition to treat or manage it.”

A British doctors’ group, The Medical Ethics Alliance, expressed its objection over the mistreatment of Alfie Evans, calling it “medical tyranny.”

British Prime Minister Theresa May defended the hospital, arguing that medical experts — not parents and families — ought to be the ones to make decisions in such cases. Members of Parliament, however, are leading a campaign to create “Alfie’s Law,” which would prevent a similar tragic situation.

Carol Tobias, president of the National Right to Life Committee, said, “Let’s be clear: Alfie Evans was sentenced to death by Britain’s National Health System and the High Court. Their intransigent commitment to the country’s faulty health system led them to conclude it was better for Alfie to die than leave the country and receive potentially life-saving treatment elsewhere.”

Stefano Gennarini, director of legal studies at the Center for Family and Human Rights says Alfie’s case is not the first time British courts have overruled parents’ wishes to continue fighting for a disabled child’s life. “It happens on a daily basis. There are just very few families that actually challenge the bureaucracy,” explained Gennarini.

One of those cases involved a British infant, Charlie Gard. British courts ruled that Charlie’s parents did not have the right to make decisions about his life support. Charlie suffered from rare mitochondrial disease and brain damage. The hospital refused to allow experimental treatment and also refused transferring him to another hospital that would allow treatment. In the end, Charlie’s parents’ last request to take him home to die was also denied. A judge ruled that Charlie be moved to a hospice where his life support was stopped and he died not long after in July 2017 only days before his first birthday.

Currently, at the Children’s Hospital of Philadelphia, two families are pursuing legal action to stop the hospital from removing their sons’ life support. One, a 14-year-old, was injured in a fire in the family’s home in New Jersey and has been declared brain dead. The other boy, age 10, was declared brain dead after suffering cardiac arrest.

Cases like these have sparked international outrage as the legal battle pits hospitals and courts against parents and families over who has the right to make life and death decision for family members

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