Wednesday, April 18, 2018
Battle over Alfie Reaches Rome
Today, April 18, Pope Francis received in audience the 21-year-old father, Tom Evans of Liverpool, England, of an almost-2-year-old boy, Alfie Evans, who has been in a Liverpool hospital for many months.
(Here, left, Alfie Evans with his father Tom Evans, and, right, in the first months of his life before he slipped into a coma. The baby is now 23 months old. The baby’s father flew to Rome and today met with Pope Francis to ask for the Pope’s support in having the Liverpool hospital where Alfie now is not to remove the baby’s breathing equipment, without which the baby will quickly die. The father would like to take the baby out of the hospital to another hospital to try other treatment options, but doctors have reportedly said it is in his “best interest” to stop mechanical ventilation, and England’s courts have agreed)
(Here, Pope Francis with Tom Evans today in the Domus Santa Marta in Rome)
And after the meeting, the Pope publicly added his voice to the father’s in asking that Alfie receive “the basic medical assistance” that he needs in order to stay alive — assistance that the Liverpool hospital where Alfie is staying may be withdrawn in the next few hours or days, leading to the baby’s death.
(Below, Tom Evans kisses the Pope’s ring)
(Below, Alfie’s parents, Tom Evans, 21, and Kate James, 20)
The issues
First, an preliminary note: some of the issues in this case remain shrouded in mystery, despite months of press coverage. This makes coverage of this story — and judging what it means, and what is the right thing to do — particularly difficult.
Moreover, I am neither a doctor, nor a legal expert, so it is quite possible that I may not correctly understand some aspect of this case.
Still, because the Pope today became directly involved, and because the case involves a human life, the life of a baby, and because it also seems, clearly, to involve parental rights to choose the best course of treatment for their child, I am making an attempt to write about this case.
Yesterday here in Rome I spoke with a person who has spent considerable time in recent days with Tom Evans, the father, and with Alfie, the sick baby. What I write here is based on that conversation.
The first great problem in this case is that there is no clear, definitive diagnosis of what ails Alfie.
The second great problem — and this is the issue that is the murkiest aspect of this case — is the peculiarity and complexity of the legal framework, that is, of law regulating the relative weight of the decisions of medical professionals (doctors) and patients and their representatives or guardians (for example, parents).
That is, there seems to be a legal regime, or legal precedent, in England, and in Europe, according to which hospitals have the right to make the final decision on the “best treatment” for a patient, over against the wishes, or rights, of the (in this case) parents, or other close relatives.
The third concern is the overarching societal background.
This case, occurring in 2018, is taking place against a general backdrop in which the dignity of the individual human life is being increasingly threatened. There are pressures throughout our society to “euthanize” very old and very sick patients, both because treatment is costly, and because our society increasingly feels that “poor quality of life,” if it drops below a certain threshold, is the determining factor in maintaining and defending life, instead of defending life “from the moment of conception to the moment of natural death,” which has always been the Catholic teaching.
Against this background, Alfie’s case becomes a legal “test case” to set a precedent, one way or the other, regarding the right of parents to choose the best care for their children, and the right to life of each one of us, even if we are terminally ill, to live until our lives end naturally.
As such, it is an important case for all of us.
The situation
So this is the situation:
After Alfie was born in June, 2016, Alfie’s parents spent several months with him as an apparently healthy baby, with bright eyes and with evidently normal growth and development processes.
Then, at about the age of six or seven months, in December 2016, a year and four months ago, Alfie began to be “lethargic.” His parents took him to a number of British doctors.
According to my information, at some point during this process, Alfie also received “many” vaccinations, often several all at once, and “many” medications.
Some in Alfie’s circle believe, I was told, that he should undergo a period of full “de-toxification,” and that if this were done, there might still be a chance for him to recover.
So there is some questioning in the circles around Alfie about the effectiveness and side-effects of the overall medical treatment Alfie has received, as I understand it.
Some months ago, Alfie slipped into a coma. (How severe this coma is, I do not know; I was told yesterday that Alfie still opens his eyes; this seems to suggest at least the possibility of a partial or full recovery.)
(Here below is a photo taken just a few days ago by Tom Evans, Alfie’s dad, showing Alfie with his eyes open)
The doctors in the Liverpool hospital have judged Alfie’s coma “irreversible” and have diagnosed Alfie as suffering from an “unknown degenerative condition.”
Alfie’s condition has harmed Alfie’s brain function, the doctors say. They have estimated that 70 percent of Alfie’s brain is now “non-functional.”
Alfie was put on a breathing machine some months ago. A tracheotomy through his throat was not done. As I understand it, the consequence of this decision was that Alfie’s lungs, bypassed, over time partially or completely atrophied.
Therefore, the only way Alfie can now breathe on his own, without the breathing machine, as I understand it, would be if he were slowly “weaned off” the machine, and his lungs “retrained” to breathe again.
This, perhaps, would allow him to breathe without the machine. But whether this is even possible, I do not know.
In any case, the doctors, who say Alfie’s condition is irreversible and hopeless, now wish to detach him, very soon, within days, from the special life support system to which he has been attached, and through which he has been breathing, for many months.
Within minutes of the doctors removing Alfie from this breathing system — which he has come to depend upon — he will cease to breathe, and then die.
In this situation, Alfie’s mother and father — and their hundreds of friends and supporters — say they would like… another opinion.
And they say they could get that opinion in Rome, at the Bambino Gesu hospital, one of the best pediatric hospitals in the world (which evidently has agreed to receive Alfie if he is brought to Rome), or in Munich, Germany, or perhaps in America, where a somewhat “non-traditional” doctor has evidently said he would like to offer an innovative alternative treatment that he thinks might help Alfie.
Alfie’s parents seem to have the money (apparently from donations), to be financially able to bring Alfie to these hospitals.
However, the Liverpool hospital will not allow Alfie to be removed from the hospital while still on life support.
Yet, if Alfie is taken off of life support, even just to leave the hospital, he — as I just wrote — will die quickly.
Hence, the present impasse.
The following article is from a Catholic website in England, called ICN (Independent Catholic News). Here is a link to their web page (link).
And here is a link to the article, which follows below the link:
Source: Vatican Media/Liverpool Echo (link)
Pope Francis met with Tom Evans, the father of seriously ill British toddler Alfie Evans, in the Vatican today.
Afterwards the Holy Father renewed his appeal for the respect of the lives of Alfie, and Vincent Laurent, a French hospital patient. He said: “the only author of life, from its beginning to its natural end, is God.”
Speaking during the General Audience today, the Pope said he wanted to highlight their plights and remind us that “it is our duty to do all that is possible to safeguard life.”
“Let us gather in silence and pray so that the lives of all persons, especially of these two brothers of ours, are respected,” he said.
Pope Francis had asked for prayers for Vincent Laurent, a severely brain-damaged man in France, and for Alfie Evans, a British infant with an undiagnosed degenerative disease, during his Regina Coeli address on Sunday (April 15).
Both patients are on life support and their families are fighting legal battles to ensure they continue to receive necessary basic medical care — rather than have their life-support systems switched off.
During that appeal Francis asked that everyone pray for “people, such as Vincent Lambert in France, little Alfie Evans in England, and others in different countries, who have been living, sometimes for a long time, in a condition of serious infirmity, and are medically assisted for their basic needs.”
These “delicate situations,” he said, are “very painful and complex. Let us pray that every sick person may always be respected in their dignity and cared for in an appropriate way for their condition, with the unanimous contribution of family members, doctors and other health-care workers, and with great respect for life.”
Alfie’s parents are asking that he can be taken to another hospital abroad for treatment. The Bambino Gesu children’s hospital in Rome and other hospitals, have offered to take him, but the British medical team are refusing to allow him to leave.
Alfie Evans’s dad meets Pope Francis as family plead for help saving their son
Tom Evans flew to the Vatican to raise the issue with the Pope, who has mentioned Alfie in prayers and tweeted about him
By Josh Parry, Senior reporter, Liverpool Echo (link)
10:22, 18 APR 2018
Updated13:34, 18 APR 2018
The dad of seriously ill youngster Alfie Evans met The Pope to plead for help in the battle to keep his son on life support.
Tom Evans, 21, revealed he had visited The Vatican to meet with the the pontiff in order to ask for his support in his legal battle with Alder Hey [the name of the hospital in Liverpool.]
The specialist children’s hospital believes it is in the youngster’s best interests to withdraw ventilation as he is suffering from an undiagnosed, but untreatable brain condition — which doctors say has left 70% of his brain destroyed.
However his parents — Tom Evans, 21 and Kate James, 20 — wish to take him to the Bambino Gesú hospital in Rome, where it is understood they have given the same prognosis but would be willing to perform a tracheotomy.
If that option fails, they plan to take him to another hospital in Munich.
Posting to the official supporters group known as “Alfie’s Army,” Mr Evans said that he was “praying for asylum.”
In a message believed to have been delivered to The Pope, he claimed that his son was “not dying, and does not deserve to die.”
He said: “Our child is sick, but not dying and does not deserve to die. He is not terminally ill nor diagnosed. We have been trying our best to find out his condition to treat or manage it.”
“I am now here infront of your holiness to plea for asylum, our hospitals in the UK do not want to give disabled children the chance of life and instead the hospitals in the UK are now assisting death in children.
“Alfie is not dying, so we do not want to take him out the way the hospital wish us too (sic).
“We see life and potential in our son and we want to bring him here to Italy at Bambin Gesú where we know he is safe and he will not be euthanised.”
Here is another story on the case, this one today from The Sun in England. It contains details about infections that caused Alfie’s condition (link).
TOT’S BATTLE
Who is Alfie Evans, who are his parents Tom Evans and Kate James, and what do we know about his illness?
The toddler’s parents have been engaged in a passionate battle to keep their boy alive
By Holly Christodoulou, Phoebe Cooke, Jay Akbar and Danny De Vaal
18th April 2018, 8:12 am
Updated: 18th April 2018, 3:21 pm
ALFIE Evans has been at the centre of a life support battle between his parents, health officials and the British justice system for several months.
Judges ruled the boy’s machine should be switched off, but his parents — and the Pope — have passionately disagreed. Here’s what you need to know about the heartbreaking case.
Alfie Evans has been living in a coma for well over a year after being struck down with a mystery illness.
The 23-month-old missed numerous developmental milestones in his first seven months, his family said.
He started making “jerking, seizure-like movements” and was taken to the doctors, but his parents were told he was “lazy and a late developer”, the family claim.
But he caught a chest infection that caused seizures and was placed on life support at Alder Hey Children’s Hospital in Liverpool in December 2016.
Alfie, who was born on May 9, 2016, is in a “semi-vegetative state” and has a degenerative neurological condition doctors had not definitively diagnosed.
Some experts believe he might have a mitochondrial condition — the same as Charlie Gard.
After he was admitted to Alder Hey, his parents were told he wasn’t going to make it — but he fought back to beat the infection and started breathing on his own.
But he caught another chest infection and had to go back on a ventilator when he began having more chronic seizures.
Alfie is described as being in a semi-vegetative state and doctors at Alder Hey have said it is in his best interest to stop mechanical ventilation.
What is mitochondrial DNA depletion syndrome?
Mitochondrial DNA depletion syndrome (MDS) refers to a group of disorders that cause affected tissues to suffer from a significant drop in mitochondrial DNA.
The DNA is found in the mitochondria of cells — an organelle found in most cells in which respiration and energy production occur.
This means, as in Charlie’s case, that sufferers do not get energy to their muscles, kidneys and brain.
MDS causes progressive muscle weakness and brain damage. The condition is rare and Charlie is said to be one of only 16 people to have ever had the condition.
MDS is almost always fatal in babies and young children, although some sufferers have made it into their teenage years.
There is currently no cure but some treatments have shown a reduction in symptoms.
One of these is Nucleoside bypass therapy.
Parents Kate James and Tom Evans are fighting to keep their little boy Alfie Evans alive
Who are Alfie’s parents?
Alfie Evan’s parents are Tom Evans and Kate James, both in their 20s and from Liverpool.
The couple have consistently placed pressure on the justice system in a bid to keep their son alive.
Tom Evans in particular has spoken out in public, slamming every one of the court rulings.
The couple appear to be religious, with Tom citing the 10 commandments in a court case, reminding the court “thou shalt not kill”.
Writing after judges at the European Court of Rights rejected the case, Tom said that he and his partner were “in bits, distraught, in pain”, and the decision meant their son was “about to be murdered”.
On April 13, Tom and Kate announced that they will launch yet another legal challenge to fight for their son’s life.
They are set to ask the Court of Appeal to allow Alfie’s treatment to continue and for him to be transferred to a hospital in Italy.
This is despite a date set for his life support to be withdrawn.
Speaking outside Alder Hey hospital on Friday April 13, Tom said he had been told he could face prison if he removes Alfie from hospital, adding that there are police officers on the ward to stop him taking his son.
In the latest appeal, Lord Justice Davis, ruled that Alfie’s life support must be turned off and told lawyers that doctors had agreed that there was “no hope”.
He said: “We cannot have a kind of legal ‘Groundhog Day’ where you come back again and again and again on the same point.”
The court was also read a statement from Lord Justice Hayden’s previous ruling where he said: “The terrible reality was that almost the entirety of Alfie’s brain has been eroded, leaving only water and cerebral spinal fluid.
What did the Pope have to say?
The high-profile case has even caught the attention of the Pope, who pledged his support to keep Alfie alive.
The Holy Father tweeted: “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.”
On April 18, Alfie’s dad Tom visited Pope Francis and begged him to “save our son.”
Alfie Evans timeline: how the fight over one young boy’s life has unfolded (link)
By Steve Graves, Liverpool Echo
09:15, 20 FEB 2018 (with added updates to April 18)
Alfie Evans’s family and supporters are gathering in London today [February 20, 2018] as a judge is set to decide the seriously ill young boy’s fate.
Mr Justice Hayden is due to provide his judgement at the High Court, after a seven-day hearing in Liverpool over the future of Alfie, who is being cared for at Alder Hey Children’s Hospital.
The hospital believes no more can be done for Alfie and has applied to withdraw treatment, but his parents Tom Evans and Kate James have argued passionately that they should be allowed to move their son to another specialist children’s hospital in Italy. Alfie’s parents — and his legions of supporters across Merseyside and beyond — hope doctors there can provide a diagnosis for the mystery illness which has afflicted him.
The timeline below charts the history of Alfie’s condition – and the legal battle surrounding his future.
Time Line
Timeline: Alfie Evans’s life and the court battle surrounding him
May 9, 2016 — Alfie is born
Alfie is born in a three-bedroom property in Dingle — his uncle’s home. He spends the first few months of his life there.
December 2016 — Alfie admitted to Alder Hey hospital
Alfie is rushed to Alder Hey hospital after he slopes back in a chair and begins to make jerking movements. His condition deteriorates at Alder Hey, with Alfie suffering seizures and then slipping into a coma.
Late 2016 — Alfie taken to doctors several times
After the first few months of his life where Alfie seemed healthy and smiley, parents Tom and Kate become concerned after noticing he was very weak — taking him to the doctors several times.
June 2017 — Parents fear court battle
Dad Tom Evans tells the (Liverpool) ECHO he fears Alder Hey could mount a legal battle to switch Alfie’s life support off, as it is not clear Alfie can recover.
June 2017 — “Alfie’s Army” offers support — and fresh hope
Thousands of people join “Alfie’s Army” online, with messages of support flooding in after the ECHO first reported the story. A change.org petition backs the parents and Alfie’s parents say they have new hope of a diagnosis in the USA.
August 2017 — Parents turn to doctor who offered to help Charlie Gard
Charlie’s parents turn to Dr Michio Hirano, the US neurologist who offered to provide revolutionary treatment to help Charlie Gard. They also say doctors in Utah and Italy have said they may be able to help.
December 2017 — Alder Hey hosital applies to switch off life support
Alfie’s parents say they are in a “living nightmare” as the hospital says they have exhausted all options. In a letter to the parents, Alder Hey say they are opposing a proposed move to an Italian children’s hospital — and applying to the High Court to switch off life support
February 1 — High Court case begins
Liverpool civil and family court is the venue as High Court judge Mr Justice Hayden [Note: Sir Anthony Paul Hayden (born 24 June 1961), styled The Hon. Mr Justice Hayden, is a judge of the High Court of England and Wales and former barrister who specialises in family and children’s law. He was called to the bar at Middle Temple in 1987 and was appointed a Queen’s Counsel (QC) in 2002] hears evidence from lawyers and doctors on behalf of Alder Hey on Alfie’s condition. Tom Evans speaks on behalf of Alfie and the family, along with mum Kate. There are emotional scenes as the hearing goes on for seven days.
February 20 — Judge says life support should end
Judge Mr Justice Hayden ruled that little Alfie’s life support should not be continued, despite his parent’s determination to move their son to another specialist children’s hospital in Italy to see if they can diagnose and treat his condition. Alfie’s parents vow to fight decision. Dad Tom: “My boy is strong, my boy is comfortable. This isn’t over, this is just the start… I’m not giving up. My son ain’t giving up.”
March 6 — Appeal fails
Appeal Court judges uphold the decision but Mr Evans vows to fight this in the Supreme Court
March 20 — Supreme Court refuses case
Supreme Court justices refused to hear the case in London.
March 28 — The European Court refuses case
The European Court of Human Rights in Strasbourg also decline to look at the decision.
April 11 — Date set for withdrawal of life support (date is not revealed for legal reasons)
After the family and doctors fail to agree on an end of life care plan for Alfie, the hospital are legally obliged to seek a date from the High Court for Alfie’s life support to be withdrawn. Mr Justice Anthony Hayden sets a date and time — which cannot be reported for legal reasons.
April 12 — Emergency order granted
As hundreds gather outside the hospital to protest the decision, the court issues an emergency order paving the way for a further hearing at the Court of Appeal.
April 16 — Appeal denied
Appeal Court justices rule against the parents at a Court of Appeal hearing. The family indicates they are set to seek to lodge further proceedings in the Supreme Court.
April 18 — Alfie’s father is in Rome and meets with Pope Francis
The boy’s father, Tom Evans, and others, meet with Pope Francis this morning in the Domus Santa Marta in Rome, the Pope’s residence.
Here is another article from the Liverpool paper on this case.
Who are the lawyers fighting the Alfie Evans case? The Christian Legal Centre explained
The group are anti-abortion and say homosexuality is a ‘challenge’ to society
By Josh Parry, Senior reporter, Liverpool Echo (link)
13:26, 18 APR 2018
Updated13:36, 18 APR 2018
It’s the legal case that’s hit the headlines and touched hearts around the world — and now a new legal team are fighting to keep Alfie Evans on life support.
The parents of the seriously-ill youngster, Tom Evans, 21 and Kate James, 20, have been involved in a long-running legal battle with Alder Hey Children’s Hospital, who wish to withdraw Alfie’s ventilation.
However, Tom and Kate have exhausted almost all avenues possible to fight the decision and wish to take him to the Bambino Gesú hospital in the Vatican City.
This week, at the latest Court of Appeal hearing, the family were represented by barrister Paul Diamond, standing counsel to the Christian Legal Centre (CLC).
The group — part of religious freedom campaigning organisation Christian Concern — provide legal assistance to Christians who believe their religious freedoms are being infringed.
Who are Christian Concern and the Christian Legal Centre?
The Christian Legal Centre is a branch of Christian Concern — a religious lobbying organisation which has been vocal on a range of topics including abortion and gender identity.
CLC claims it handles more religious discrimination cases than any other group in the UK.
Their website says they “exist to defend Christians in the public sphere and to protect the freedom of Christians to live their lives in accordance with their Christian beliefs.”
What do Christian Concern and the Christian Legal Centre believe in?
Christian Concern is an anti-abortion organisation which says “divorce, homosexuality and transsexualism are the three most significant challenges to God’s pattern for family in today’s society.”
They have also fought against compulsory sexual education in school.
A mission statement on their website reads:
“We have a passion to see the United Kingdom return to the Christian faith.
“Our nation has been shaped and defined by this faith for hundreds of years.
“Yet in the last few decades, the nation has largely turned her back on Jesus and embraced alternative ideas such as secular liberal humanism, moral relativism and sexual licence.
“The fruit of this can be seen in widespread family breakdown, immorality and social disintegration.”
On abortion, their website says: “At Christian Concern we resist abortion and aim to inform women of its dangers. We believe that every unborn child should have their right to life protected.”
Paul Diamond represented Alfie’s family in their unsuccessful bid to the Court of Appeal on April 16, 2018.
He is standing counsel to the Christian Legal Centre and has represented them in a number of high profile cases.
According to his website:
In 2015, he successfully represented a Christian nanny who called a lesbian “sinful” and said “god is not okay with what you do.”
In 2014, he represented a couple who owned a guest house who were warned they could be discriminating against gay people as they refused to issue double rooms to unmarried couples.
He also represented the Core Issues Trust who had placed “Not gay! ex-gay, post-gay and proud” posters on the London Underground — which were found to have been lawfully removed by Transport For London.
They have been involved in a number of high-profile cases recently.
The CLC currently represent a family who withdrew their son from school after a classmate came into class sometimes “dressed as a girl.”
Their website also states they are representing a relationships counsellor who was dismissed from his job because he said during a staff training day that he was not sure whether he was comfortable with giving sex advice to homosexual couples.
Statement on case of Alfie Evans from Catholic Bishops’ Conference of England and Wales (link)
April 18th, 2018
Source: CCN
Our hearts go out to the parents of Alfie Evans and our prayers are for him and with them as they try to do all they can to care for their son.
We affirm our conviction that all those who are and have been taking the agonising decisions regarding the care of Alfie Evans act with integrity and for Alfie’s good as they see it.
The professionalism and care for severely ill children shown at Alder Hey Hospital is to be recognised and affirmed. We know that recently reported public criticism of their work is unfounded as our chaplaincy care for the staff, and indeed offered to the family, has been consistently provided.
We note the offer of the Bambino Gesu Hospital in Rome to care for Alfie Evans. It is for that Hospital to present to the British Courts, where crucial decisions in conflicts of opinion have to be taken, the medical reasons for an exception to be made in this tragic case.
With the Holy Father, we pray that, with love and realism, everything will be done to accompany Alfie and his parents in their deep suffering.
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