It’s hard to look at this rationally, when children are terminally ill. Especially, when one doesn’t have to make this tough decision. On one hand, I can see the parents’ agony, yet on the other, how the children are suffering, not able to live a normal life. It’s a decision I would have trouble making.
In the UK, there are several children whom have had their life support systems turned off, so they could die with dignity. And these stories have touched the hearts of many around the world, even as far as the Vatican.
One such child is 23 month old Alfie Evans, who suffers from an undiagnosed degenerative neurological condition and has been in a coma at Alder Hey Children’s Hospital in Liverpool, England, for over a year.
Parents Tom Evans and Kate James want to exert their parental rights to take Alfie to the Vatican-owned Bambino Gesù Children’s Hospital in Rome, Italy – a care option backed by the Pope. Although the doctors at the Vatican hospital say there is no cure for his condition, they had offered to take him to Rome for operations to help him breathe and eat, which would have allowed him to survive for an “undefined period”.
His parents, Tom and Kate fought the UK courts and the European Court of Human Rights for two months after the hospital made the decision to stop treating the child, with a High Court judge ruling on the 11th of April that Alfie must be removed from life support.
But when life support was removed two weeks later on the 23rd, Alfie continued to breath unaided, only receiving help from oxygen and water after six hours off ventilation – against the alleged expectation of doctors.
Thursday night the Evanses signalled that their fight was over and said they would be working with the hospital on a care plan, asked supporters to cease their vigils, and said they would be making no more statements in order to focus on their son.
Then there is the case of Isaiah Haastrup. March 6th, Lanre Haastrup and Takesha Thomas lost their battle at the Strasbourg court to stop King’s College Hospital doctors from removing life support from their son Isaiah.
You see, Isaiah suffered brain damage during his mother’s complicated labour — which King’s College Hospital admitted it was partly responsible for, due to “specific issues in monitoring” during his birth.
The hospital at one time denied Mr. Haastrup visitation of his son when he was near death, administrators claiming the father had ‘verbally abused’ hospital staff in an argument over the withdrawal of baby Isaiah’s life support.
One-year-old Isaiah died March 7th, in the presence of both his parents.
Then the high-profile case of Charlie Gard brought parental rights versus doctors’ decisions to the fore in the summer of 2017.
The pleas of the parents of Charlie Gard to doctors, UK courts, and the EU court were denied as they fought to have baby Charlie removed from the care of Great Ormond Street Children’s Hospital, London, to seek experimental treatment overseas for his mitochondrial condition.
Although the medical condition differs greatly from that of Alfie, Charlie, and Isaiah, one British toddler defied doctors’ expectations and not only lived after being removed from life support, but got better from what was believed to be a terminal illness.
In 2016, doctors told Kerry Askin that her three-year-old son Dylan would not survive his rare form of lung cancer, influencing the mother to decide to turn off his life support.
Mrs. Askin had her unresponsive son baptised on Good Friday and the family agreed to have him removed from life support.
However, the child stunned doctors by improving. After life support began to be removed, Mrs. Askin related that “once the muscle relaxant was turned off… we discovered he needed more sedation. Upon doing that he slowly improved!”
By Easter Sunday he was stabilised and discharged just two weeks later from hospital. Two years later, Dylan had beaten his illness.
Then 2014 saw an analogous high profile battle over treatment options for five-year-old Ashya King that resulted in a so-called abduction, an international manhunt, and his parents’ arrest.
Ashya was diagnosed with a brain tumor, and had brain surgery and doctors recommended he also have chemotherapy and radiotherapy as part of his treatment. But his parents Brett and Naghemeh King disagreed with this line of treatment, wanting him to have proton beam radiotherapy instead because they did not want him to be “pelted with radiation”.
Doctors stood by their plan of treatment, so shortly after, Aysha’s parents took him from Southampton General Hospital and boarded a ferry to France. The parents were arrested later in Malaga, Spain.
After extradition was denied, a High Court ruling agreed that Aysha could be taken to the Czech Republic for proton therapy.
Three years later, Ashya was cleared of cancer and according to his father is playing and speaking again.