Manchester, UK: Alfie Evans, the terminally ill boy at the heart of a long-running legal battle, died in the early hours of Saturday, his father, Tom Evans just announced on Facebook saying he passed away at 2.30 am, early Saturday morning.
“My gladiator lay down his shield and gained his wings at 02:30,” he wrote. “I love you my guy.”
Kate James, 21, Alfie’s mother, wrote: “Our baby boy grew his wings tonight at 2:30 am. We are heart broken. Thank you everyone for all your support.”
Mr Evans had been fighting Alder Hey Children’s Hospital in court to take the toddler to Rome for continued medical care.
Kate, whose son suffered from a rare neurological disease, lost a series of appeals against the decision by the hospital in Liverpool to withdraw life support for Evans.
Alfie had his ventilator removed late on Monday after his parents exhausted all legal avenues to stop a February court ruling permitting the move, but has continued breathing independently this week.
His parents suffered their latest court defeat on Wednesday, when three judges rejected taking the boy to Rome for treatment, despite high-profile interventions in the case from Pope Francis and the Italian government.
Medical experts had agreed that more treatment would be futile, but his parents had wanted to take him to Rome, where the Vatican’s Bambino Gesu hospital had offered to care for him.
EARLIER: UNCRC & The Baby Alfie Evans Conundrum – Manchester, UK: On Tuesday afternoon, the parents of sick 23-month-old baby Alfie Evans – at the Family Division of the High Court in Manchester – lost a last-ditch legal challenge to take their son to Italy to seek treatment, in what the judge called the ‘final chapter in the case of this extraordinary little boy’.
Baby Alfie Evans reportedly suffers from encephalomyopathic mitochondrial DNA depletion syndrome (MDS or MDDS). His parents wished to seek further treatment for their boy and continue to fight for his life.
The U.K. courts sided with Alder Hey Children’s Hospital, which claimed keeping Alfie on life-support was not in his “best interests.”
On Monday, Alfie Evans had his life-support removed, but the little boy is still alive and fighting, apparently able to sustain his own life – without life support. His father said Oxygen treatment resumed 20 hours later.
The Italian Embassy came to the family’s defense and granted baby Alfie citizenship in hopes the boy could leave the U.K. and seek treatment there as benefactors have offered to pay for transportation and medical care.
After this was denied, the parents made another legal challenge at a hearing on Tuesday before Mr Justice Hayden, in the Family Division of the High Court in Manchester.
The parents request was denied by Justice Hayden, Tuesday afternoon
Paul Diamond, for Alfie’s parents, told the judge the boy could live for as long as 10 days without life-support ventilation
An Alder Hey clinician, part of the team treating Alfie overnight, told the court the soonest they could move him home would be 3-5 days but that hostility to medics makes that “impossible” at present.
Italian ambassador’s chief of staff was in court. Alfie’s family barrister told the court the case has reached the “highest levels of the Italian government” and that a military air ambulance is available to take Alfie to Rome.
Alfie’s plight comes less than a year after another British baby boy with a rare genetic condition, Charlie Gard, was taken off life support after his parents lost a similar battle with judges and medical officials.
But cases like baby Alfie are not limited to the U.K.
In 2005, medical experts and child welfare bureaucrats in the U.S. state of Massachusetts deemed 11-year-old Haleigh Poutre “virtually brain-dead,” in a “persistent vegetative state,” and not worth saving after she suffered abuse by her stepfather that left her in a coma. Doctors at Baystate Medical Center in Springfield and extermination agents at the Massachusetts Department of Social Services won a court order to remove Haleigh’s ventilator and feeding tube – a “treatment” schedule to allow her succumb to “death with dignity.”
Haleigh Poutre, however, emerged from the vegetative state, as state officials prepared to remove her life support. She began breathing on her own and picked up toys on command.
“There has been a change in her condition,” a DSS spokeswoman announced. “The vegetative state may not be a total vegetative state.”
Haleigh Poutre, now 24, lives with adoptive parents. She is confined to a wheelchair, but attends school and occupational therapy.
In a case that made national headlines 2005, Terri Schiavo – who was deemed to be in a a total vegetative state – died, after a Florida judge agreed to have her life support removed
Back in Britain, Alfie defied the medical professionals and survived the night off the ventilator as his parents begged court officials to take him to Rome. Benefactors have offered to pay for transportation and medical care; Italy granted Alfie citizenship.
In 2013, medical experts at Children’s Hospital in Oakland, California declared Jahi McMath “brain-dead” after a routine tonsillectomy gone wrong. The hospital pushed to have all life-sustaining medical treatment terminated as medical professionals predicted quick deterioration.
But Jahi’s mother (a professional nurse), Latasha “Nailah” Winkfield, moved her daughter to a long-term care facility in New Jersey. It’s nearly four years later, and Jahi is reportedly still on life support.
The Baby Alfie conundrum has divided opinions across the aisle not just from the Medical ethics angle but also the fact that the U.K. is a signatory to the U.N. Convention on the Rights of the Child (CRC or UNCRC).
UNCRC is a United Nations human rights treaty that gives states legal authority to make decisions about a child’s welfare – which means that the child’s rights are protected by the state, not by his parents.
Because Britain signed the CRC in 1991, Alfie’s parents cannot intervene for his best interests.
This would not happen in the United States because the court in the United States is charged with allowing the parents to direct the upbringing of their children. And those parents are bound by law to do what’s in the best interest of those children. Those rules don’t exist in the UK or any of the 192 nations who’ve signed the CRC.
Pope Francis Verified account @Pontifex: Moved by the prayers and immense solidarity shown little Alfie Evans, 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.
Fr. Frank Pavone Verified account @frfrankpavone: “There is such a thing as a worthless treatment but there’s no such thing as a worthless life.” #BabyAlfie #AlfiesFight #AlfiesArmy #AlfieEvans #prolife #humanrights #ThursdayThoughts
Janet Morana @JanetMorana: Can we agree that doctors should do everything to save life rather than take life should be #AUniversallyAcceptedTruth? #babyalfie deserves to be treated with #humandignity, he is alive and just as valuable as the #royalbaby #AlfiesFight #alfieevans #alfiesarmy #WednesdayWisdom