Charlie's parents, Connie Yates and Chris Gard, from Bedfont in west London, wanted Charlie to have an experimental treatment called nucleoside bypass therapy (NBT). The treatment is not invasive and can be added to food. A hospital in the US agreed to offer Charlie the treatment, and Charlie's parents had raised £1.3m in funds to take him there.
Full Answer
Is experimental treatment for Charlie Gard worth it?
He cites two reasons for these views; "Experimental treatment for Charlie Gard is associated with significant side effects such that it is highly likely not to be in his interests to provide it." and that "in January [the Doctors] could not have predicted that 6 months and 4 court judgments later treatment would still be continuing".
Who is Charlie Gard and what illness does he have?
Who is Charlie Gard? Charlie was born on 4 August 2016 with an exceptionally rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). Although he appeared perfectly healthy when he was born, his health soon began to deteriorate.
When did the hospital agree to admit Charlie Gard?
^ "New York hospital agrees to admit Charlie Gard", CBS News, 6 July 2017. ^ Bourdin, Anita (3 July 2017). "Rome's Bambino Gesù Hospital Is Ready to Receive Charlie Gard – ZENIT – English".
What will be the legacy of the Charlie Gard case?
Indeed, if there is to be one overriding legacy of the Charlie Gard case it is likely to be related to this. There is already a long-term trend towards greater scepticism of medical opinion. Coupled to the power of the internet this could create an environment whereby doctors find their decisions increasingly challenged.
Did Charlie Gard get treatment?
Their own medical experts from overseas had examined Charlie and concluded that his condition was now too far advanced for experimental treatment to work. The family agreed to a plan to withdraw life support, though bitterly regretted what they perceived as a lost chance to help Charlie.
What is nucleoside bypass therapy?
Nucleoside bypass therapy: an experimental treatment designed to restore the normal number of deoxynucleotides (dNTPs) in the mitochondria of cells in patients with certain forms of mitochondrial DNA depletion syndrome. dNTPs are components of DNA.
What happened with Charlie Gard?
Outcome. On 27 July 2017 Charlie was transferred to a hospice and the next day his mother announced at 6:30 pm that he had died. The mechanical ventilator had been withdrawn; he was given morphine to relieve any pain beforehand, and died within minutes.
Is there a cure for mitochondrial DNA depletion syndrome?
There is no cure for Mitochondria Depletion Syndrome. Genetic testing is important to identify the specific cause of the syndrome.
How many people have been diagnosed with mitochondrial DNA depletion syndrome?
Frequency. FBXL4-related encephalomyopathic mtDNA depletion syndrome is a rare condition; the exact prevalence is unknown. At least 50 affected individuals have been described in the medical literature.
Did Baby Charlie pass away?
British baby Charlie Gard, who was at the center of a legal battle that captured the world's attention, died Friday, one week before his first birthday.
What Happened to Baby Charly?
After six years of continuous fighting, aggressive treatments, and three major surgeries, Charley passed away, surrounded by her family and loving oncology team at Studer Family Children's Hospital at Ascension Sacred Heart. Charley is survived by her family, mom Heather, brother Elijah, and grandfather “Pop”.
Who started Charlies law?
Over the past nine months, Charlie's parents, Connie Yates and Chris Gard, have been working with NHS medical professionals, world-leading ethicists and legal experts to develop draft legislation that will prevent further long and painful conflicts between hospitals and families with sick children.
What disease did Charlie the Tot have?
The tot had a disease called mitochondrial DNA depletion syndrome, as both of his parents Connie and Chris were unknowingly carrying the faulty gene. On Friday, July 28, his mum said the little boy had lost his battle with the illness. Doctors at Great Ormond Street Hospital had said Charlie should be allowed to die with dignity ...
Why did Charlie and the Doctor end the fight?
They eventually ended the fight for treatment because "time has run out", admitting that they didn't expect him to live to see his first birthday. 2. Charlie had a rare disease called mitochondrial DNA depletion syndrome Credit: PA:Press Association.
How many people signed a petition calling for Charlie to be allowed to travel?
More than 490,000 people signed a petition calling for him to be allowed to travel. July 17 - A US doctor flew into the UK to meet with British medics. Dr Michio Hirano believed he could help Charlie. July 18 - Dr Hirano met doctors at Great Ormond Street.
Why did the Pope give Charlie Gard a passport?
The Pope declared that he wanted to give baby Charlie Gard a Vatican passport to move him to an Italian hospital.
Who are Charlie's parents?
Charlie's parents, Chris Gard and Connie Yates, eventually withdrew their application to take their son to America for an experimental course of treatment. Here is how the heartbreaking story unfolded...
When did Charlie's parents get their end of life?
July 26 - Following a deeply emotional day in the courtroom, a judge gave Charlie's parents until 12.00pm on July 27 to reach an agreement with GOSH on his end-of-life care – failing which he will be transported to a hospice for his final days. July 27 - The 12.00pm deadline for an agreement over Charlie's end -of-life care passed, ...
Did Charlie's parents end their legal fight?
But it was announced on July 24 that Charlie's parents were ending their legal fight and had withdrawn their application from the High Court. Their barrister Grant Armstrong told the court: "This case is now about time. Sadly time has run out.".
Why was Charlie sent to Gosh?
In October 2016, Charlie was transferred to London's Great Ormond Street Hospital (GOSH), a National Health Service (NHS) children's hospital, because he was failing to thrive and his breathing was shallow.
What was the case of Charlie's death?
At the time of Charlie's death, The Washington Post wrote that the case "became the embodiment of a passionate debate over his right to live or die, his parents' right to choose for their child and whether his doctors had an obligation to intervene in his care".
How many doctors were in the Gosh trial?
The court heard testimony from two doctors and two nurses from GOSH, four doctors from whom GOSH had sought second opinions, from a doctor appointed as expert witness by the parents with the court's permission, and from Hirano by telephone from the US.
What did Gosh discuss with Charlie's parents?
GOSH began discussing with the parents the ending of life support and the provision of palliative care. By this time, relations between the parents and the doctors had deteriorated. One GOSH doctor emailed another: "Parents are spanner in the works. Recent deterioration with worsening seizures means trial is not in his best interests." The email emerged in the subsequent court case; the judge said that he understood the distress it had caused the parents, but that it was important to view the email in the context of notes passed between consultants about Charlie's best interests. The parents disagreed with the doctors at GOSH; they wanted to take him to New York to receive the nucleoside treatment.
What did medical experts say about Hirano?
Medical experts criticised interventions by Hirano and others for raising the parents’ hopes and for causing delays to the process. Genetics expert Robert Winston said "interferences from the Vatican and from Donald Trump" were "extremely unhelpful and very cruel". Winston added: "This child has been dealt with at a hospital which has huge expertise in mitochondrial disease and is being offered a break in a hospital that has never published anything on this disease, as far as I'm aware." Some commentators in the United States argued that Charlie's plight was the result of the UK having a state-run national health service and that the decision to withdraw Charlie's life support was driven by cost. The High Court judge described these comments as "nonsensical", adding that "it was one of the pitfalls of social media that the watching world felt it right to have opinions without knowing the facts of the case". The chairman of GOSH made a statement condemning "thousands of abusive messages", including death threats received by staff at the hospital and harassment of other families in the hospital over the preceding weeks. GOSH asked the Metropolitan Police Service to investigate the abuse. The parents issued a statement condemning harassment of GOSH staff and said they had also received abusive messages. GOSH released a statement criticising Hirano for offering testimony without having physically examined Charlie and without review of the medical records; they also said Hirano had disclosed that he had a financial interest in the treatment very late in the process. Hirano made a statement in response saying that he had relinquished his financial rights in the treatment.
What is the likelihood of a positive effect and benefits to Charlie of the proposed nucleoside therapy?
the likelihood of a positive effect and benefits to Charlie of the proposed nucleoside therapy to be markedly improved compared to the views expressed in court; the likelihood that the proposed nucleoside therapy will cross the blood brain barrier to be significantly enhanced.
When was Charlie scheduled for a tracheostomy?
A committee meeting was scheduled for 13 January, and Charlie was provisionally scheduled for a tracheostomy on 16 January. GOSH invited Hirano to examine him in January, but he did not examine Charlie until July.
What did Charlie's parents say about Charlie's death?
"Charlie's parents have tirelessly advocated for what they sincerely believed was right for their son, and nobody could fault them for doing so," Great Ormond Street hospital said in its statement. "The priority of our medical staff has always been Charlie. ... Every single one of us wishes that there could have been a less tragic outcome."
Why did Charlie's parents want to take him home?
Charlie's parents wanted to take him home to die. If they couldn't take him home, they wanted to keep him alive on a respirator in a hospice facility so they could have several more days together.
Can doctors override parents' wishes?
"British law allows doctors to override the wishes of parents in treatment decisions if it's in the child's best interest," NPR's Joanna Kakissis reported. And that's exactly what happened. The hospital would not allow Charlie to be transferred, and British courts upheld that decision.
How old was Charlie Gard when he died?
Few British legal cases in recent years have proved as controversial or emotionally charged as that over the fate of Charlie Gard, the 11-month-old baby who died on Friday after a lengthy battle over his medical treatment.
Why did Charlie's parents give him a powder?
The hospital said it was not possible to give Charlie the non-invasive treatment - a powder that could be added to his food - that his parents felt could help him in his battle with mitochondrial depletion syndrome, a condition which causes progressive muscle weakness and brain damage .
What problems did Gosh Hospital face?
One of the problems the hospital faced, particularly as the case developed and the parents received more media attention, was that it simply could not win. While Charlie's parents gave television and newspaper interviews and made pleas on social media, GOSH was left to rely on media statements and court papers to explain its position.
Who is Daniel Sokol?
Chris Gard and Connie Yates announce the end of their legal fight for treatment. Daniel Sokol, a medical ethicist and barrister , says the case has shone a light on this issue. "It reminds us that the rights of parents over their children are not absolute.
Is scientific reasoning stripped of emotion?
Emotion, which is utterly certain, wins in comparison. "However, scientific reasoning cannot be completely stripped of emotion. Perhaps this is an asset we need to cultivate more. Reasoned evidence needs champions to engage the hearts of people.". The story of Charlie Gard.
Is it easier to prove someone is at risk or can be helped by medical treatment?
Of course, proving someone is at risk or can be helped by medical treatment is much easier to do than proving a treatment is no longer in the best interests of a child when the parents disagree. But what was often overlooked in the Charlie Gard case was that it wasn't just the doctors against the parents.
International Transfer and Futility Disputes
The possibility of transferring a patient to another health care institution has long been seen as a potential solution to intractable disagreement between professionals and families. 20 In the North American context, this has sometimes been enshrined in law.
Obstructing Transfer
Why should health professionals seek to impede transfer if there are health professionals willing to provide treatment? I will outline 3 ethical arguments in defense of this approach in select cases.
In Favor of Transfer
However, even if it is accepted that parents’ refusal of treatment may sometimes be overruled, one distinguishing feature of the Gard case (and several others that have reached the courts in the United Kingdom) is that parents had qualified health professionals who were prepared to provide the treatment.
Conclusions: Preventing Harm
It is justified for health systems to obstruct transfer of children for treatment that is believed would cause harm to the child. Of course, that then leads back to the contested question of whether the treatment requested by parents would be harmful.
Competing Interests
POTENTIAL CONFLICT OF INTEREST: The author has indicated he has no potential conflicts of interest to disclose.
What did Charlie have that made him not move?
He also had congenital deafness and epilepsy. Charlie suffered from severe progressive muscle weakness, which meant that he couldn’t move his arms or legs or breathe unaided. He couldn’t open his eyes, which weren’t developing properly. It was impossible to tell if he was in pain and whether he was awake or asleep.
What happened to Charlie the baby?
After a month, his parents noticed Charlie was unable to support himself or lift his head, which is something other infants his age are able to do. The weeks that followed saw Charlie unable to gain weight despite a regular feeding programme, and he was transferred to Great Ormond Street Hospital.
What is Alfie Evans' condition?
Alfie Evans suffered from a degenerative neurological condition . He was admitted to hospital in December 2016 after suffering seizures and remained a patient. His parents wanted to fly Alfie to Rome for further treatment, which the Alder Hey Children’s Hospital described the decision as “futile, unkind and inhumane.”.
How old was Charlie when he died?
He died on the 28th July 2017, aged 11 months old, after his life support was removed.
Why was Charlie's parents appeal rejected?
This is why the parent’s appeals were rejected. The High Court concluded that the success was too low to justify the trauma Charlie would experience . The success of the procedure also wouldn’t have meant a sufficient quality of life.
Why did Charlie have RRM2B?
He inherited this disease because both his parents were carriers of the recessive gene. Charlie’s brain, heart, liver, kidneys and his ability to breathe were severely affected. He also had congenital deafness and epilepsy.
How much did Charlie's parents raise for Dr Hirano?
Charlie’s parents accepted Dr Hirano’s offer of experimental treatment and raised the £1.3M travel and treatment costs through crowd-funding campaigns. They believed, as did their supporters, that it was their parental right and responsibility to give their child any and all life-saving treatment they could.
The Best Interest Standard as Intervention Principle
In the last 2 centuries, the best interest of the child standard was adopted as an intervention principle to guide custody determinations between parents. It was considered more neutral than the Roman standard based on presumed paternal property rights or the later standard based on presumed maternal rights under the “tender years” doctrine.
Best Interest as Guidance Principle
In contrast with the use of the best interest standard as an intervention principle for custody disputes, the best interest standard was incorporated into 20th century medical ethics as a guidance principle for proxy decision makers.
Best Interest Not To Be Taken Literally as Guidance
Despite claims that parents are held to a best interest guidance standard, many theorists argue for greater parental discretion than best interest permits.
What Standard Then for Intervention?
If parents are not literally held to a best interest standard, then when should the state intervene? The most popular intervention principle is the harm principle as explicated by Doug Diekema.
Guidance and Intervention Principles in Medical Guidelines in the United States and United Kingdom
Despite criticisms of the best interest standard, and controversy over what roles best interest plays in pediatric decision making, pediatric guidelines in both the United States and the United Kingdom assert that decision making should be held to the “best interest of the child” standard. There are two significant differences.
Denouement
In July 2017, Dr Hirano traveled to the United Kingdom, examined Charlie, and claimed that a recent “MRI scan of Charlie’s muscle tissue…revealed that it is very unlikely that he would benefit from this treatment.” 45 Charlie’s parents accepted his pronouncement, withdrew their appeal, and Charlie was transferred to a hospice unit, where the ventilator was withdrawn.
Competing Interests
POTENTIAL CONFLICTS OF INTEREST: The author has indicated she has no potential conflicts of interest to disclose.
Overview
Treatment
Charles Matthew William Gard was born on 4 August 2016, at full term and normal weight, to Christopher Gard, a postman, and Constance Yates, a carer for young people with learning difficulties, both of Bedfont, west London. He seemed to develop normally at first, but his parents noticed after a few weeks that he was less able to lift his head, and they took him to his GP. On 2 Octobe…
Reactions
On 30 January 2017, the parents launched an appeal on the crowdfunding website GoFundMe to finance experimental treatment in the United States. Donations had exceeded £1.3 million by the end of April. The publicity campaign was well under way before the legal process had started. At no time during the court process was any criticism levelled at the parents for this campaign and there was no suggestion that the court's powers be used to limit or control this publicity.
Legal proceedings
The court proceedings were under the inherent jurisdiction of the High Court (wardship), conducted within the principles and provisions of the Children Act 1989.
In wardship, the High Court assumes parental rights and responsibilities if an application is made and the court deems the application appropriate. Parents and public bodies have a responsibility to take actions in the best interests of a child. Doctors treat children with the consent of parents; …
Outcome
On 27 July 2017 Charlie was transferred to a hospice and the next day his mother announced at 6:30 pm that he had died. The mechanical ventilator had been withdrawn; he was given morphine to relieve any pain beforehand, and died within minutes.
Issues
Medical experts criticised interventions by Hirano and others for raising the parents' hopes and for causing delays to the process. Genetics expert Robert Winston said "interferences from the Vatican and from Donald Trump" were "extremely unhelpful and very cruel". Winston added: "This child has been dealt with at a hospital which has huge expertise in mitochondrial disease and is being offered a break in a hospital that has never published anything on this disease, as far as I'…
External links
• Charlie's Fight, family website
• Smith-Squire, Alison (parents' media representative). Charlie Gard—a family's real life story in the spotlight, FeatureWorld.
• GOSH's position statement (pdf), hearing on 13 July 2017