Over the weekend I published this piece over at the National Catholic Register regarding the fate of baby Alfie Evans who is only 18 months old.
To recap, Alfie doesn’t have a diagnosis of terminal illness, in fact he doesn’t have a diagnosis at all, but that hasn’t stopped Alder-Hey hospital which is treating him, from coming to the conclusion that he would be better off dead.
In their legal submission Alder Hey claims that Alfie is insensate and unaware of any kind of stimulation or sensation. You need only to look at some of the videos on his Facebook page, to see that this is not the case. In one extremely poignant photo, baby Alfie is seen opening his eyes when his mummy picks him up for a cuddle. In another you can see Alfie clearly responding to his father’s voice and even stretching.
The reason why Alfie is in what appears to be a comatose state is because he is drugged up to the eyeballs on 4 different anti-convulsant medications in order to prevent the seizures which he was experiencing, which could cause brain damage. These drugs not only sedate Alfie, but also depress his breathing, making Alfie more reliant on his ventilator. The cumulative effect of all of them together increases their side-effects.
Alfie’s family have a number of questions surrounding his care, one of them being why he has been intubated for so long without ever being offered the option of a tracheostomy? Intubation is never intended as a long term option – it is uncomfortable and the tube which Alfie has fitted has been identified as being too large for a child of his age and size. One of the reasons why Alfie needs sedative drugs is order to suppress the gagging and discomfort which accompanies intubation.
Another effect of intubation is that of long term damage to the trachea, vocal chords and muscles required for breathing. It is considered best practice to perform a tracheostomy after 3 weeks of intubation in order to lessen these risks. A tracheostomy does less damage to the trachea, doesn’t required sedation and makes it much more likely that the patient could be weaned off the ventilator and in many cases, even allows for the patient to go home.
While it cannot be guaranteed that this would have been the outcome for Alfie , it calls into question Alder Hey’s submission that all options have been exhausted, because clearly this one has not been tried and as a result Alfie has potentially missed out on an extra year of babyhood and development.
Despite previously recommending a brain biopsy for Alfie, Alder Hey state that this procedure is too invasive.
Another hospital in Europe has agreed to take Alfie and perform a tracheostomy immediately.
On the subject of tubes Alfie also has a feeding tube fitted through his nose and down his throat, along with the ventilator tube. It’s quite a lot of equipment to be fitted into a baby’s tiny throat for an entire year, especially with the large uncomfortable tapes across his face.
As with the intubation, when internal feeding is required for a long time, normal practice is to fit a PEG feeding tube directly to the stomach, yet Alfie has not received one. The nasal tubes were not designed to be fitted long term and are insanitary. Last time Alfie’s feeding tube was changed it was blocked with deposits from meds and food. Alfie’s current tube has mould on a connecting piece and apparently the hospital hasn’t responded to repeated inquiries about changing it.
This is particularly concerning given that Alfie seems to be prone to repeated infections, especially when the staff keep informing his parents that the next infection could kill him. So far every time that Alfie has contracted a life-threatening infection, being a little fighter, he’s overcome it. Alfie’s team also say that they have seen older children with finer, narrower tubes than his and ask why this is, especially when Alfie’s breathing tube is already too large.
Alfie’s parents have repeatedly requested a PEG tube, other doctors have recommended this, but Alder Hey refuses, for reasons best known to themselves.
You can’t therefore blame Alfie’s parents for wondering what on earth is going on with the care of their son and for feeling that Alder Hey wrote their son off some time ago, which would certainly explain their intransigence.
That said, both Kate James and Tom Evans, Alfie’s mum and dad have behaved impeccably and have begged the public not to engage in any kind of abuse towards the staff of Alder Hey. They just want their questions answered and for their son to be given the care that he deserves.
Which brings me on to the next bit. Having informed the parents to ‘get lawyered up’ in July of this year, Alder Hey have filed to the High Court for permission to appoint a legal Guardian to act on behalf of Alfie, with the stated intention of having him withdrawn from life support in order that he may ‘die with dignity’.
Their legal submission states that he is insensate. However I have seen the certificate signed on the 11th December from the medical director of a transport company who independently examined Alfie, which clearly states that he responds to voices and is good to go.
Why won’t Alder Hey facilitate this? Why can’t Alfie travel to a hospital which will give him the tracheostomy which might enable him to be weaned off the drugs. We’re not talking about giving him an untested experimental course of treatment, as in the case of Charlie Gard, but actually just giving him the care that he has so far been denied. When the alternative is death, why aren’t other people and state-of the art institutions not allowed to give him a shot at life?
It seems as though Alder Hey are playing fast and loose with the truth. Here’s what his team said to me this evening:
“We had a meeting on Friday December 1 with Alder Hey’s medical director and the three doctors dealing directly with Alfie. In that meeting, which we asked for specifically without lawyers, as parents with doctors, as a prelude before mediation, for clarifying issues. Written follow-up statements were next and then, mediation. Unfortunately the hospital went and filed to the court behind our backs and making a false statement against us on the status of mediation. We requested adjournment from the court to satisfy procedural requirements and were denied. Then we applied pressure to the hospital and they agree to request adjournment and go forward with mediation first. Unfortunately the court refused again to adjourn. We are concerned about the guardian issue and are hoping the court will see our points on several important issues in this hearing.”
So having previously been given a Christmas reprieve, Alfie’s dad is being dragged away from his bedside for a court hearing tomorrow. It is expected that the court will appoint a guardian to act in Alfie’s best interests.
No doubt some readers may think that all sounds perfectly reasonable. Why is it presumed that Alfie actually needs a guardian and that his parents aren’t capable of acting in his best interests, especially when the hospital is claiming that it’s in his best interests for him to die.
It is utterly obscene to state that by virtue of their great love for him, Alfie’s parents are incapable of doing right by him and therefore what Alfie needs is a complete stranger to decide whether or not he’s better off dead. This is no better than state-sanctioned euthanasia of a child who doesn’t even have a diagnosis. Alfie’s parents have done nothing which would merit the appointment of a guardian. In fact, it was his mother who took him to the doctor several times in the months after he was born, having noticed he hadn’t met his milestones and was fobbed off.
Remember who baby Charlie Gard’s guardian was? None other than Victoria Butler-Cole, the chairman of Compassion in Dying, a euthanasia charity.
It also seems that some of the medical testimony which will be given to the court, that even a light touch causes him a seizure, substantially misrepresents his situation and has been disproven both by video evidence and an independent examination last week.
It’s always hard writing about this kind of thing because we want to have such trust in our medical professionals and I know so many families who have been given the most optimal of care when their children are very sick.
That said it’s very difficult to come to any other conclusion other than that for one reason or another, somewhere along the line, the decision has been taken that it’s not worth trying to save the life of baby Alfie Evans.
I can only speculate why this might be, perhaps it’s because his parents are both very young working-class blue collar types and some kind of snobbery is in play. Or maybe it’s because it’s thought that Alfie will be too much of a drain on the NHS in the long-term and perhaps if his parents could have been persuaded to accept that he ought to be taken off life-support, his organs could have been used for donation?
No matter what the motivation, this case, along with that of Charlie Gard seems to be all about the normalisation of euthanasia. Edmund Adamus came under fire in 2009 when he called the UK, the geo-political centre of the culture of death, but you have to wonder what is going on in a country where if your child is critically ill, regardless of how fantastic a parent you might have been, the state determines that only they, not you, are able to determine whether they should live or die.
Edited Wednesday 20th December 2017: The first version of this blog was published on Monday 18th December 2017, the day before the Directions Hearing in the High Court. At this hearing, an anonymity order was put in place which prohibited publication in the UK media of the names of the medical professionals involved in the case. Out of courtesy for this order, passed on Tuesday 19th December, I have therefore removed the names of the individuals, even though this blog is published on an international platform, for an international readership.
I was able to verify the involvement of one of the named individuals in another well-known case via a number of independent sources, which I already knew at the time of the case.