As a parent there is nothing you want more than to shield your children from pain. To protect them from danger, and rescue them from anything that would seek to hurt them. Alfie Evans’ parents have been trying to do just that, but they’re having to fight his hospital and the courts to do it. The latter say Alfie is better off dead, even though they don’t even know what’s wrong with him because the hospital refuses to diagnose him.
Alfie was born on May 9, 2016. He was born full term, and initially looked healthy. His parents, Tom Evans and Kate James, describe him as an initially sleepy baby and slow to meet his developmental milestones. He soon began to experience episodes consistent with seizure activity, but doctors dismissed it as him being “lazy and a late developer.”
In January 2016, the eight-month-old baby developed a chest infection and was hospitalized. The prognosis his parents were given at that time was that he would not survive, and they had him christened. He was placed on life support, then recovered from the first infection.
Alfie quickly got sick again, however, and began a cycle of repetitive illnesses and setbacks in Alder Hey, the hospital his parents took him to in order to save his life. Despite numerous requests for transfers to other hospitals, his parents have not been allowed to move his care to a hospital that might be able to better care for or diagnose him. Instead, Alder Hey has sought legal representation with the goal of turning off Alfie’s life support, and giving him medications to help end his life.
Alfie’s father published the court documents that laid out the hospital’s court-approved plan for how the end of Alfie’s life should have proceeded: “With regard to the process of withdrawal of ventilation from Alfie, the Trust proposes that … a cannula will be placed in situ and infusions of Midazolam (an anxiolytic [drug used to treat anxiety]) and Fentanyl (an analgaesic [drug to reduce pain]) will be prepared. They would be commenced and increased to control symptoms if necessary.” In other words, they will make him comfortable but not treat him as he dies.
When needed, “suction of the mouth and an airway” would be provided for Alfie, and his parents have the choice of either holding him or letting him lay in a crib as a medical team watches “Alfie’s situation and level of comfort.” The document is clear that these actions will certainly and quickly lead to Alfie’s death.
Since death is unavoidable with this course of treatment, “Once all external signs of life have ceased, one of the senior doctors will sensitively physically examine Alfie to confirm that death has occurred and report the time of death.” Alfie didn’t stop breathing when his ventilator was removed on April 23, though, and has continued to breathe on his own, returning the family and hospital to court to work out another solution.
The hospital released a statement with their plans and feelings about Alfie:
— 🏥 Alder Hey 💙 (@AlderHey) April 20, 2018
Alfie does not have a definite diagnosis, and his parents have been pleading for months that without a diagnosis there is no way to know whether there is no further hope or treatment options for him. A lack of a diagnosis means there is no firm idea on what has caused his conditions, or why, or what the expected prognosis is for Alfie.
Alder Hey removed Alfie’s ventilator around 9:17 p.m. GMT on Monday. Alfie was able to breathe on his own after this, and his parents have provided consistent updates on the Alfie’s Army Official Facebook page, as well as an Instagram account, showing not minutes of life after the removal of the ventilator, but now more than 20 hours, spent in the arms of his parents.
At around 7 a.m. GMT Tuesday, April 24, Tom talked with reporters from “Good Morning Britain” about his son’s condition, noting that Alfie had been off the ventilator for nine hours at that time. He anticipated his son would need more care, including life support, in order to continue to survive, and said doctors were surprised at how well his baby was doing.
Alfie’s ability to breathe for hours on his own sharply contradicts doctors’ predictions—the same doctors who have said that there’s nothing more than can be done for him and that he’s terminally ill.
Breaking overnight: The father of Alfie Evans says doctors have removed the life support for the toddler despite an eleventh-hour legal bid to keep him alive. The 23-month-old has an incurable degenerative condition. pic.twitter.com/BmepDL0zO7
— Good Morning Britain (@GMB) April 24, 2018
A half an hour later, the Facebook page for Alfie was updated with a picture of him getting hydration and oxygen, but not on a ventilator. An emergency hearing is scheduled for 3:30 p.m. GMT today. This hearing is ongoing as of this writing.
Alfie’s case should bring to mind that of Charlie Gard, the little boy who died in the U.K. on July 28, 2017. Like Alfie, his parents desperately tried to leave the U.K. for treatment elsewhere, yet were ultimately unsuccessful despite offers from hospitals around the world to care for Charlie. Margot Cleveland’s summary of Charlie’s life, and his tragic death, are worth reading as we consider Alfie’s fight.
Alfie’s parents are confessing that their son’s life has merit and worth, and that he’s precious to them. They want him to have every moment possible, and they are fighting hard for their baby. If there are doctors and hospitals willing to try to further treat him, and offering hope that more can be done, it is cruel to withdraw all options from these parents.
These offers include Bambino Gesu, the hospital in the Vatican, which is willing to bear the costs for Alfie’s treatment, and care for both little Alfie and his parents.
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.
— Pope Francis (@Pontifex) April 23, 2018
Alfie has, as of yesterday, been granted Italian citizenship, which could allow his transfer to the Vatican hospital. His story doesn’t need to end in a National Health Service hospital.
There’s no reason to bar him from leaving this hospital and the country, and letting other doctors compassionately care for him and his parents. The NHS and the U.K. should let him and his parents go, and give him the best chance at life.