Thread by @DrDomPimenta

I am deeply disturbed by #AlderHey and #AlfieEvans case. What this tragic case desperately needs is less opinions and more facts. /thread

(Advisor: I’m not a paediatric doctor or specialist, all the information is from the official record in Court here:)
supremecourt.uk/docs/in-the-ma…
judiciary.gov.uk/wp-content/upl…

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

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

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

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

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

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

Subsequent MRI scans have shown progressive and severe destruction of the brain and brainstem, again suggestive of mitochondrial disease. /7

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

Now the human nervous system (from cortex to brain stem to spine to nerves in hands and feet and muscle) is very complex. /9

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

Much of the more basic functions that you don’t consciously think of occur in your brainstem- moving your eyes together, breathing. /11

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

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

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

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

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

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

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

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

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

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

Bembino Gesu, the Paediatric Hospital in the Vatican that has offered to take #Alfie, has not offered any “treatment”. /22

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

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: google.com/amp/s/www.apne…
/24

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

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

And that’s why several courts and court appealed all agreed with them. /27

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

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