This Is the One Twitter Thread You Need to Read About Alfie Evans
Photo by Anthony Devlin/Getty
If you’re new to the saga of Alfie Evans, The Guardian has a solid primer with the details of this strange and sad case. In short, Evans is a child in the U.K. suffering from an undiagnosed neurogenerative disorder. He has been receiving treatment at Alder Hey Hospital since Nov. 2016 (about six months after he was born), but has gradually been losing brain function. The hospital has kept him alive for nearly two years, but he is now in a semi-vegetative state with very little brain activity. In December, against the wishes of Alfie’s parents, Alder Hey applied to withdraw ventilation, saying that ongoing treatment would be “unkind and inhumane.”
An intense legal battle ensued, with the High Court ruling in favor of the hospital in Feb. 2018. An Appeals Court upheld the decision in March, and both the U.K. Supreme Court and the European Court of Human Rights subsequently denied further appeals. In April, a judge wrote that “the connective pathways within the white matter of the brain which facilitate rudimentary sensation—hearing, touch, taste and sight, had been obliterated. They were no longer even identifiable on the MRI scan.”
In almost every case, parents and hospitals come to an agreement on these matters long before it reaches a legal stage, but Alfie’s parents continued to fight. The case gained national and then international attention, resulting in a large protest outside Alder Hey in which protesters abused hospital staff and even attempted to break into the hospital itself. Then, incredibly, Pope Francis chimed in on Twitter:
It is my sincere hope that everything necessary may be done in order to continue compassionately accompanying little Alfie Evans, and that the deep suffering of his parents may be heard. I am praying for Alfie, for his family and for all who are involved.
— Pope Francis (@Pontifex) April 4, 2018
On Monday, the Italian government granted Alfie Evans citizenship, and the Roman hospital Bambino Gesu offered to treat the boy, even though Italian doctors agreed with the British diagnosis, and said the care would be palliative. Alfie’s parents sought to transport him, but on Tuesday a High Court judge ruled out that course of action. He did open up the possibility of the child returning home, and in the meantime, on Monday night, Alfie was taken off ventilation at Alder Hey. As of this writing, he remains in Alder Hey and is breathing on his own.
Various conservative politicians and pundits in America have seized on the case as an example of all that’s wrong with socialized medicine, and even to make bizarre points about gun rights:
“Why does an American need an AR-15?”
To make sure what’s happening to #AlfieEvans never happens here. That’s why.
— Joe Walsh (@WalshFreedom) April 25, 2018
The gut-wrenching story of Alfie Evans is why we should not let gov’t make decisions that only God should make. Brits have decided some kids just aren’t worth that much and are disposable. #prayforalfiehttps://t.co/OP6lkXrL1N
— Gov. Mike Huckabee (@GovMikeHuckabee) April 24, 2018
It is a grim reminder that systems of socialized medicine like the National Health Service (NHS) vest the state with power over human lives, transforming citizens into subjects.
— Ted Cruz (@tedcruz) April 25, 2018
There’s a lot to digest here, but it will come as no surprise that the conservative faction seem to be deliberately misunderstanding the facts of the case, and engaging in ugly opportunism designed to push an agenda. Which brings us to Dr. Dominic Pimenta, a junior doctor and writer who took to Twitter to help illuminate the subject for those getting caught up in the political squabbles. He offered the clearest and most concise insight into the specific medical facts of the case, and he did it all from the court record. His thread is so good, and so necessary in this instance, that we’re including it in its entirety here in the hope that it will put the grandstanding of American political figures in its proper context.
I am deeply disturbed by #AlderHey and #AlfieEvans case. What this tragic case desperately needs is less opinions and more facts. /thread
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
Alfie was born to young parents aged 18 & 19 in May 2016, who from the court accounts delivered a happy healthy baby and coped extremely well. /1
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
Alfie first developed new strabismus (squint) at 2 months, as well as subtle signs of delayed development: lack of head control, sleeping all the time, not reaching for things. /2 pic.twitter.com/1qvXNMezT9
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
Alfie, now 6 months, was taken to a specialist children’s doctor, who formally documented his development was at the stage of a 6-8 week old. /3 pic.twitter.com/mHHWcZlPyd
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
A MRI scan showed widespread abnormal changes to his brain, specifically the cortex (see below), which were not associated with any specific neurological syndrome but suggested mitochondrial disease /4 pic.twitter.com/uUiq9mz5nE
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
Alfie then developed a fever and shortly after seizures that persisted. He rapidly deteriorated, having short episodes of apnoea (not breathing at all), so he was moved to the Intensive care unit at #AlderHey. /5 pic.twitter.com/y9mx0dvX0L
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
Where he has remained since Dec 2016- 15 months ventilated with a machine via a tube directly into his lungs, fed through a tube into his stomach and hydrated through tubes directly into his bloodstream. /6
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
Subsequent MRI scans have shown progressive and severe destruction of the brain and brainstem, again suggestive of mitochondrial disease. /7 pic.twitter.com/n620mOTeAa
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
Later EEGs in January 2017 (electrical tracings of Alfie’s brain) have been documented to be “essentially” flat, consistent with no upper brain activity whatsoever. /8 pic.twitter.com/GDs2jTKg2H
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
Now the human nervous system (from cortex to brain stem to spine to nerves in hands and feet and muscle) is very complex. /9 pic.twitter.com/kwFpZFOU3K
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
All of the thinking that makes you YOU occurs in your cerebrum, the big squishy pink thing at the top. Imagine this as your consciousness. /10 pic.twitter.com/fYWrVX7Dq4
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
Much of the more basic functions that you don’t consciously think of occur in your brainstem- moving your eyes together, breathing. /11
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
The spine is mostly a motorway for signals from your brain to your muscles to move things and from your skin to your brain to feel things. /12
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
However there are some very basic loops that occur in the spine as well, so called primitive reflexes. These serve functions like helping us stay standing. /13
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
Returning to Alfie, the electrical tracings of his brain and images show no activity. The bit that makes him HIM is damaged beyond all repair. He may move or twitch with reflexes or seizures but this is not consciousness. /14
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
Which is the key point because unfortunately, and unlike in the very similar and recent #CharlieGard case, there is no diagnosis for Alfie. No one knows what exactly is causing this progressive and destructive brain damage. /15
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
The possibilities based on his symptoms point to some form mitochondrial disease- the parts of the brain cells which provide raw energy to keep those cells functioning don’t work. /16 pic.twitter.com/2HIwLXRwuh
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
Very little is know about these diseases- #CharlieGard was one of only 16 cases ever identified. In court it was posited Alfie’s diagnosis may be unique and even become known as Alfie’s disease /17 pic.twitter.com/DlVW9w937X
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
We are beyond the limits of modern medicine here and intersected with the post-truth culture we now live in has led to protestors trying to storm a children’s hospital. /18
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
We don’t have any way to reverse brain damage. From the day you are born you lose brain cells at a rate of ~9000/day. We have no way to reverse this. If we did we could cure stroke, dementia, traumatic brain injury, Parkinson’s, multiple sclerosis, maybe even ageing itself. /19 pic.twitter.com/VmnIDIP4Qh
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
Characterising Alfie as having a “chance”
To fight for is grossly irresponsible. Tragically his damage, whatever the underlying cause, is beyond our reach to fix. /20 pic.twitter.com/ZHHBlTvZb3— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
In the meantime Alfie has tubes and wires stuck into his body & undergoes uncomfortable procedures daily. From his brain activity he may not feel anything at all, but what from what we know about intensive care survivors if he can “experience” then he will be suffering. /21
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
Bembino Gesu, the Paediatric Hospital in the Vatican that has offered to take #Alfie, has not offered any “treatment”. /22
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
They’ve offered to cut a small whole in Alfie’s neck so the breathing tube can be placed directly into his lungs instead of his nose, and basic hydration for €65,000. And that’s it. /23 pic.twitter.com/KfDTvOVEde
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
They’ve offered no further tests or specialists or a diagnosis. In the same way they offered to #CharlieGard without a legitimate medical basis. Bembino Gesu is also not as sterling organisation as is advertised: https://t.co/UNfMNH8iIv
/24— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
So we are left with a tragically unwell child, likely suffering if he can feel anything at all, whose life is being prolonged artificially with no quality of life or chance of improvement. /25
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
And that’s exactly why the children’s doctors and nurses at #AlderHey, who already do one of the hardest jobs in our profession, applied to withdraw the invasive support Alfie was having. /26
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
And that’s why several courts and court appealed all agreed with them. /27
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
This isn’t “murder” or “euthanisia” or “state control”. The state kept Alfie alive for nearly 18 months, at not a penny cost to his suffering family, and we should be immensely proud of that. /28
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018
And please remember #AlfiesArmy that there are other children and suffering parents in that hospital as well. You are scaring them. Go home and maybe donate your time and money to medical research if you really want to help. /end
— Dr Dominic Pimenta (@juniordrblog) April 24, 2018