Alfie Evans was born a healthy baby boy. Beautiful and loved, within a few months, his parents started noticing he was very sleepy and wasn't meeting milestones as he should. According to the petition on change.org, after a pattern of seizures of unknown etiology and several lung infections, Alfie has been continuously hospitalized since December of 2016 in the pediatric intensive care unit at Alder Hey Hospital. Staff has refused to do a tracheostomy just as they did in the Haastraup case despite the fact the child has required long term breathing assistance due to repeated infections.
Alfie is in a "semi-vegetative state" and has a brain condition which doctors have not been able to diagnose and do not expect him to recover from. The Alder Hey NHS Trust has argued that continuing life support is not in Alfie's best interests and say continuing to treat him is “unkind and inhumane”.
"Semi-vegetative" does not mean brain dead. It means a person has muted or questionable responses to environmental stimuli. Alfie's parents object to this characterization and have posted videos to Twitter to prove their point.
For those not familiar with my background, as an RN I cared for children like Alfie. We may have referred to him as somnolent or semi-conscious, but he does not appear remotely vegetative. Further, he is on a number of medications to treat intractable seizures and sedation is common with ventilation.
Understand what Alder Hey is proposing. They are proposing removing the ventilator and feeding tubes from Alfie's nose. That child you just saw moving and opening his eyes, would essentially suffocate.
Why since December of 2016 this child has not had a tracheostomy and a feeding tube placed, I can not fathom. Under those conditions with nursing and family support, Alfie could have been at home being cared for months ago. This would have further reduced the possibility of repeated serious lung infections, which he has suffered from. Hospitals are factories for the nastiest and most virulent germs. I worked with dozens of parents and families who learned to capably manage complex therapies for their children at home.
And many of them had "no cure". For children like Alfie with loving and attentive parents the goal was always to enhance the quality of life to the degree possible.There is nothing that says Alder Hey and the "cadre of experts" have the definitive answer for Alfie. I took care of a child with Lysinuric protein intolerance. It occurs in fewer than 1 in 60,000 births worldwide. My patient had a tracheostomy and a ventilator before he was 2. His parents consulted "specialists" nationwide before getting a definitive diagnosis.
Other hospitals in the EU have offered to examine Alfie, who is currently undiagnosed. In other words, doctors have no idea why his symptoms exist. Alfred Hey is actively trying to stop this from happening and refusing palliative treatment.
Charlie Gard lit up the world with outrage that courts and doctors would be assuming the decisions that absolutely should be made by a child's parents. Isaiah Haastrup and now Alphie Evans have barely caused a whimper. I can not believe we have become immune to the outright extermination of children, so I am not sure why there is not outcry.
There is a ray of hope for Alfie. The judge in this case has ordered an MRI before he will rule on the case. I pray he also orders a neurologist other than one from Alfred Hey provides the reading.