E (A Child)
| Jurisdiction | England & Wales |
| Judge | Lord Justice McCombe,Lady Justice King,Lord Justice McFarlane |
| Judgment Date | 06 March 2018 |
| Neutral Citation | [2018] EWCA Civ 550 |
| Court | Court of Appeal (Civil Division) |
| Docket Number | Case No: B4/2018/0441 |
| Date | 06 March 2018 |
[2018] EWCA Civ 550
IN THE COURT OF APPEAL (CIVIL DIVISION)
ON APPEAL FROM
THE HIGH COURT OF JUSTICE
FAMILY DIVISION
Mr Justice Hayden
The Royal Courts of Justice
Strand, London, WC2A 2LL
Lady Justice King
Lord Justice McFarlane
Lord Justice McCombe
Case No: B4/2018/0441
Mr Stephen Knafler QC, Mr Leon GlenisterandMs Sophy Miles (instructed by MSB Solicitors) appeared on behalf of the Appellants
Mr Michael Mylonas QC (instructed by Hill Dickinson) appeared on behalf of the First Respondent
Ms Sophia Roper (instructed by CAFCASS Legal) appeared on behalf of the Second Respondent
Judgment (As Approved)
This is an application for permission to appeal, with an appeal to follow if granted, from an order made by Haynes J sitting in Liverpool on 20 February 2018. By his order the judge made a raft of declarations, in particular that Alder Hey Children's NHS Foundation Trust (“the Trust”) would be acting lawfully and in the best interests of a little boy, Alfie, now 21 months old (born 9 May 2016), by withholding certain medical treatment including all forms of ventilation and that thereafter he receive only palliative care.
The effect of the declaration would be that the ventilator which keeps Alfie alive would be removed and he would die shortly thereafter. The parents, who chose to be unrepresented before the judge, seek to appeal the declarations and accompanying orders. They now have the benefit of leading counsel, Mr Knafler QC, and junior counsel to represent them in relation to their application for permission to appeal.
The Trust and Alfie's Children's Guardian, each support the judge's decision and submit that the challenge to the judge's order by the applicant is misconceived.
Before embarking upon what is necessarily a somewhat lengthy and detailed judgment in the light of the legal issues raised by Mr Knafler, I think in fairness to the parents waiting anxiously on the other end of a telephone line, I should tell them immediately that their applications for permission to appeal are refused, save in one respect, and insofar as permission to appeal is granted in that respect, the appeal will be dismissed.
The facts
Alfie was born on 9 May 2016. The judge described his early days as follows:
“3. Alfie was born at the Liverpool Women's Hospital. He was delivered at full term with a healthy weight and discharged home three days after the birth. Alfie's mother was then 18 years old and this was her first pregnancy. Alfie's father, Tom, was 19 years of age. Though self-evidently very young and though Alfie had not been planned, his parents were delighted by him. They were both determined to be good parents and, from what I have seen and read, were instinctive and natural. The couple were well supported by their respective extended families. Alfie was a happy, smiling baby, who seemed to be perfectly well.”
This attractive snapshot of a young couple embarking on parenthood was, tragically, destined to be short lived.
The first indications that there were problems began to manifest themselves in July 2016, and by the time Alfie was six months of age there were significant signs of developmental delay. Alfie was referred to the Outpatient Clinic at the Alder Hey Hospital in November 2016. Alder Hey is a tertiary referral centre and one of the country's leading centres for the assessment and treatment of children suffering from neurodegenerative disorders. The unit has a team of 12 consultant paediatric intensivists and 6 paediatric neurologists, together with a complement of specialist paediatric nursing staff.
Upon examination at referral, it was clear that Alfie, now six months old, was functioning in a range appropriate to a six- to eight-week-old baby. A brain scan was carried out and flagged up abnormalities, including, the possible diagnosis of a mitochondrial disorder. Two weeks later, on 14 December 2016, Alfie was admitted to Alder Hey Accident and Emergency Department with a high fever and seizures. An initial plan to admit Alfie into the High Dependency Unit for non-invasive respiratory support was abandoned when his condition deteriorated significantly, and instead he was transferred to the paediatric Intensive Care Unit.
Throughout December and January Alfie was very unwell with severe bilateral pneumonia, such that the treating clinicians felt that they had no alternative but to broach with the parents the real possibility that Alfie might not survive. In the event, Alfie did not succumb to the pneumonia. The judge found Alfie's survival became an “absolutely crucial feature of Alfie's treatment in the father's mind.” He went on;
“I think, having prepared himself for the worst, he believes that Alfie's triumph over this infection is indicative of potential for more general recovery. In cross-examination the father has been critical of the doctors for having the conversation with him which he believes to have been premature. He perceives this as “the hospital giving up on Alfie”.”
One can well understand the father's position, particularly given that there was, and remains no diagnosis. In his mind, with a diagnosis would come the possibility of treatment and, if not a cure, at least a possibility of halting the inexorable deterioration which was the only alternative.
Whilst Alfie recovered from pneumonia, his EEG and clinical presentation were grim. An EEG in January 2017 showed attenuation, with little in the way of reactive response for much of the time. Changes were seen on the trace only when Alfie had a seizure. Clinically, he showed no response to tactile, visual, auditory or sensory stimulation. Now, a year on, his papillary response is entirely abnormal, with only the most subtle brief dilation to light, without any normal constriction.
MRIs
As already noted, the MRI performed on 30 November 2017 raised the possibility of either degenerative disorder or a metabolic disorder. A second scan was undertaken in February 2017 and a third on 22 August 2017. This third scan, shockingly, revealed that by now 70% of Alfie's brain had been destroyed.
Given that by the time the matter came before the judge the most recent scan was nearly six months old, the judge, first having been reassured that it would not be either unsettling or intrusive for Alfie, requested an up-to-date scan. A further scan was therefore undertaken on 2 February 2018. This scan showed the almost total destruction of Alfie's brain, with fluid identical to water or CSF now present where brain matter should be.
The Trust instructed Professor Helen Cross, the Prince of Wales Chair of Child Epilepsy at UCL and Great Ormond Street Institute of Child Health, to conduct an independent clinical review of Alfie. Professor Cross reviewed the EEGs and the MRIs and examined Alfie at the PICU.
Professor Cross concluded that Alfie has a progressive, ultimately fatal, neurodegenerative condition, most likely a mitochondrial disorder. Professor Cross considered all the evidence, including the dramatic deterioration on the EEG. Professor Cross concluded that Alfie's brain was now only able to generate seizures, in other words his seizures are not contributing to the neurological degeneration but are a consequence of it.
The judge recorded the way in which Professor Cross, in evidence, explained the situation to the father when she was cross-examined by him in the hearing:
“During her cross-examination by F she told him in gentle terms that even if it were possible to stop Alfie's seizure, which did not look likely given his poor response to anticonvulsant treatment to date, his brain is entirely beyond recovery. The brain, she said, again on F's enquiry, simply has no capacity to regenerate itself, unlike, e.g. the liver. She agreed that nobody knew quite why the brain does not have the ability to do so, but is simply “acknowledged by neurologists that it cannot.””
The professor explained in response to one of the father's questions that the brain can only generate further from existing matter, and therefore there is no possibility that because Alfie's brain has not yet at his age become fully formed, it might generate as opposed to regenerate, brain matter.
Professor Cross' sombre conclusion was that, “even if Alfie is able to sustain respiration in the short term, on discontinuing ventilation his respiratory effect will not sustain life.” Further therapy, she said, would not have an impact on the seizures and even if the seizures were reduced it would not change Alfie's outcome.
In August 2017, in the light of the latest MRI, the Trust had discussions with the father proposing that treatment of Alfie should be limited, including the marking of his notes with “Do Not Resuscitate.” While initially agreeing to this, the parents subsequently withdrew that agreement. In the light of this impasse, at a meeting on 25 August 2017 the parents were asked to provide the clinicians at Alder Hey with a list of those specialists that they would wish Alder Hey to contact with a view to requesting them, or some of them, to conduct further independent reviews of Alfie. Dr M contacted the doctors on the parents' list, doctors who live and work variously in the United States, Germany, and the United Kingdom. Of those approached, Dr Samuels, a consultant respiratory paediatrician, was the only one who had the necessary expertise and was willing to review Alfie. This he did, at the parents' request, on 30 August 2017.
Dr Samuels agreed with the diagnosis of the Alder Hey...
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