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Condemning Children to Die: State vs Parents

by | May 3, 2018 | Healthcare

Who has ultimate control over the fate of children – is it the parents or the state? Governments across the Western world are cracking down on families that don’t wholly submit to the will of the authorities. Homeschooling is under attack in Hawaii, Maryland, and California, as well as the U.K. and Norway, where a particularly shocking incident saw a 12-year-old boy tackled to the ground by Child Protection Services and removed from his family after a decision to homeschool. A couple in the U.K. had their foster children removed because of their political allegiance. But the most tragic episodes of the state overriding the rights of parents revolve around medical treatment, as was the case with recently deceased infant Alfie Evans.

Alfie died aged almost two years old, after suffering from an undiagnosed neurodegenerative disorder that made him reliant on life support machines to survive. “My gladiator lay down his shield and gained his wings… absolutely heartbroken,” tweeted his father Tom, three days after doctors turned off Alfie’s life support.

Alfie Evans

Alfie Evans: Credit Alfie Evans Facebook page

While fate dealt this family a cruel hand, it was the state that prevented Aflie’s parents from seeking ongoing medical treatment after the family and doctors disagreed over the best interests of the child. A bitter legal battle ensued. In December 2017, the Alder Hey hospital where Alfie was being treated applied to the U.K. High Court – which can assume parental rights and responsibilities – to withdraw parental rights and to remove life support. The hospital claimed that there was “no hope” for Alfie and that further treatment would be “unkind and inhumane,” an idea the family disputed. The court ruled in favor of the hospital, declaring it “is not lawful that such treatment continue.” Alfie’s transfer to another medical facility was refused in appeal, despite other treatment options.

In April, Tom Evans flew to Rome to meet the Pope and a place was opened at the Vatican owned Bambino Gesu hospital to care for Alfie. He was even granted Italian citizenship, with the country’s Ministry of Foreign Affairs expressing hope that he be allowed “immediate transfer to Italy.” But it was not to be; the British state had made its decision, and Alfie was quite literally sentenced to death.

Charlie Gard

Only months earlier, the Charlie Gard case started a debate about the rights of parents versus the authority of the state. Born with a rare genetic disorder that resulted in brain and muscle deterioration, Charlie’s London doctors soon approached his parents over ending life support; the parents disagreed, wishing to try experimental treatments in New York. Relations between the medical team and the family deteriorated, with court documents revealing an email sent from one doctor to another that read, “Parents are spanner in the works. Recent deterioration with worsening seizures means trial is not in his best interests.”

Charlie Gard: Credit Charlie Gard Facebook page

The courts found in favor of the medical team, reportedly denying the parents even the right to take their son home for the last days of his life. Family spokesman Alasdair Seton-Marsden went so far as to call Charlie “a prisoner of the state,” though Gard’s parents later accused him of fuelling counterproductive public protest and abuse of medical staff.  As with Alfie, the court insisted on carrying out its ruling despite offers of assistance from around the world. The Bambino Gesu hospital opened its doors to Charlie, as the U.S. did with the offer of experimental treatment from New York-based Dr. Michio Hirano. President Trump tweeted his desire to help the family while Congressmen Brad Wenstrup (R-OH) and Trent Franks (R-AZ) announced their intention to introduce legislation granting permanent resident status to Charlie Gard and his family, saying in a press release:

“Our bill will support Charlie’s parents’ right to choose what is best for their son… Should this little boy be ordered to die – because a third party, overriding the wishes of his parents, believes it can conclusively determine that immediate death is what is best for him?”

Parents Vs. The State

Similar cases are more common than we might expect. London social workers are currently attempting to make disabled 11-year-old Melody Driscoll a ward of the court because her parents disagreed with doctors over her medical treatment. Brain damaged infant Isaiah Haastrup died in March; while his parents were able to be with him at the end, the court not only denied their attempts to seek alternative treatment, it also temporarily removed visitation rights. His father Lanre asked reporters:

“How can you ban me from seeing my son despite having a judgment in there to kill him – for him to die. It’s really sad – it’s a sad day – where are we going in this country that a father has been banned with no criminal act?”

The U.K. has been at the forefront of removing parents’ rights over medical care, but the U.S. is close behind. The case of Israel Stinson, who was removed from life support following a ruling by the Los Angeles County Superior Court, has caused one mother to question the constitutionality of California laws.  Stinson’s mother Jonee Fonseca and the Pacific Justice Institute filed a brief with the Ninth Circuit Court of Appeals challenging the state’s laws.

We can debate the medical ethics of experimental treatments and the right to live or die, but regarding liberty, there is another debate at play here: the right of the state over that of parents to decide what happens to children. As the courts remove the rights of parents over medical treatment, so too will they encroach on parental decisions regarding education, politics anything else that is in the children’s “best interests.”

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