If you indulge me until the end of this piece, I promise the video linked above will make sense.
By now the news has spread far and wide that the final appeals of Alfie Evan's parents have been denied. The details include judges telling Tom Evans he is getting bad advice from his representative from the Christian Legal Centre. Reports say one Justice called Mr. Stroilov a “fanatical and deluded young man" and said he risked imprisonment for contempt of court with some of his legal advice.
You can read some of the highlights from inside the courtroom starting here if you wish. Personally, I found them infuriating.
In the absence of a miracle, Alfie Evans will die in Alder Hey Hospital in the coming hours or days. The idea of taking him home was floated by Judge Hayden, but given that the parents of Charlie Gard and Isaiah Haastrup were denied the same request, I am doubtful it will happen. You can't have Tom Evans whisking his child off to Italy and potentially making Alder Hey look incompetent or foolish. And I suppose having police guarding the Evans home as opposed to their hospital door would look so much worse.
Reading back through the coverage, Alder Hey's lawyers were not honest about the previous assessments they gave of Alfie's condition and prognosis at today's hearing. It was asserted in February his breaths were only seizures and that seizure activity was the only activity his brain was capable of. I guess lying today in service of preserving the infallibility and superior knowledge of the medical staff is required when the entire civilized world can see there are only three reasons for this outcome:
- Sheer arrogance
- Disguising the weaknesses of the National Health Service, which delayed over 50,000 procedures across the system in 2017 due to lack of resources
- Preventing Alder Hey's experts from being upstaged by another medical team.
Or maybe it is a combination of the three. It doesn't really matter. The entire state apparatus was made to look like fools by a toddler who continues to breathe on his own and take nourishment. The experts predicted he might breathe for several minutes following extubation. Alfie James Evans has dared to keep it up for over 3,100 minutes at this writing, but who's counting.
The only bright spot I can identify this entire horror story is Tom Evans, Alfie's father. At 21 he has taken on the entire state apparatus, brought foreign doctors in under the pretense of being "a friend" to evaluate his son, assembled an international team to whisk Alfie to Italy if permission was granted and got himself in front of the Pope to beg for help.
Tenacious in his legal fight, he has also learned how to provide much of his son's care, slept on the floor to stay by his side and shielded his partner Kate James from having to lay her grief bare in front of the cameras and supporters. In an age where the culture devalues masculinity, it is heartening to know we have young men like Tom Evans. And while they will never forget Alfie or this ordeal, I hope he and Kate can weather the coming obstacles together and someday have a gaggle of kids to shower their incredible capacity for love on.
But every man has his limit and Tom cancelled his press conference after the last hearing today. The only posts to the official Facebook page are that Alfie was still alive as of 11PM tonight in London.
I said above this is the last piece I will write about these cases in the U.K. and I am sincere. Some may find this statement crude, but it occurred to me today that I had more control over the end of life care for my 15 year old Labrador retriever than Tom and Kate have had over the care provided to their child. Let that sink in.
In the U.K. precedent has been set. The courts will not recognize changes once they have endorsed a "palliative care" plan and I suspect fewer parents will have the will to fight. This will only change if people in the U.K. want it changed. And other than a few dear souls I have interacted with, most of the comments are from folks across the pond who have accepted their role as subjects, not citizens.
Or they have a warped sense of what dignity is. Too many people to count have told me transferring Alfie would be an affront to his dignity. There is nothing dignified about this for Alfie or his parents.
Dignity preserves a family's belief and hope. If you read some of the court reporting, even Tom Evans' religious beliefs were acknowledged then dismissed. I wrote about this concept of dignity when I posted about the Isaiah Haastrup case. Isaiah died on March 8, 2018 to very little coverage in the U.S.
"Before starting a career in business I was trained as a Registered Nurse. I worked as a Field Supervisor for an agency that took care of kids like Charlie and Isaiah at home. When I see the Haastrup's and the Gard's I see the faces of every parent I dealt with in that job. I also hear the determination of every single one of them to chase down new treatments and the need to cling to the notion that their child is indeed interacting with the world around them.
I also recall attending funerals for five children under the age of 10. And being privileged to walk the journey with some truly extraordinary parents who made the decision to forego extraordinary measures for their child and end what they eventually perceived as suffering. You know the grace of God when you watch a mother stand at her child's service and sing Alison Krauss' "When You Say Nothing At All" acapella without missing a note.
Having walked the path with her, holding her when tears needed to be shed and clasping hands to pray with her at times, one thing she never lost was belief and hope. Belief that her child knew her and the connection she felt to him was reciprocal. And the hope at one point there was further treatment or a miracle coming. And at the end she believed she had exhausted every option and hoped was releasing him from pain by not inflicting more treatments on him. Without the control to make the medical decisions for her child, I am not sure she would have found peace with the outcome.
It is these two things, belief and hope, so crucial to parents struggling through the severe illness of a child the state is denying them in the U.K. Losing any loved one is a journey. Losing a child is a journey beyond words and allowing parents to work through it is crucial to healing long term. Charlie Gard's parents were denied their journey by the government. And it looks like Isaiah Haaustrap's may be as well."
In our system, which certainly has it's flaws, we are still able, using our social safety net, to provide our most vulnerable families the kind of dignity that allows the survivors to recover and and find peace. All of my patients were on Medicaid. Even if the family had private insurance.
If you can listen to the song in the linked video and not choke up, I have done a poor job making my case. But I will continue to make the case that nationalized healthcare is a tired idea that leads to the most barbaric form of rationing. I will never believe this is not the primary motivator in all of these cases in the U.K.
We need disruptive and original ideas to improve our system. So for my children and God willing grandchildren and beyond, U.S. health policy is where I will focus at least part of my activism. And in service of my littlest angels I am going to find time to act as an advocate for children and families facing dire diagnoses. Maybe in that endeavor I will find my own better angels.
But tonight, I will light another candle and say another prayer that Alfie James Evans and both of his dear parents are filled with God's grace as they face a situation thrust upon them by mere mortals acting far above their station.