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Archive for the ‘medically fragile’ Category

Charlie Gard– with his eyes open– contrasts with UK court narrative

In another last-minute, heart-stopping announcement, the European Court of Human Rights (ECHR) ruled Tuesday that 10-month-old Charlie Gard’s life-support must be continued until midnight on Monday, June 19. The court issued a statement that such aid is needed to prevent “imminent risk of irreparable harm.”

An ECHR statement said a panel of seven judges will examine the appeal by Charlie’s parents. Their judgment will be binding on the UK government.

Charlie is currently on a respirator in London’s Great Ormond Street Hospital (GOSH), suffering from a rare and progressively debilitating mitochondrial depletion syndrome first detected in October of 2016.

Last week, the Strasbourg, France-based court made the initial interim life-saving ruling, pending a full legal application by the lawyers for Charlie’s parents, Connie Yates and Chris Gard. The ECHR press release indicated this court, “grants such requests only on an exceptional basis.” Charlie’s life-support had been scheduled to be turned off Tuesday.

The ECHR is an international court of 47 member nations, with each country having one judge, and abiding by the European Convention for the Protection of Human Rights.

EMOTIONAL ROLLERCOASTER
Since January, Connie and Chris have battled –with world-wide public support and $1.5 million funds pledged– to have their son released from GOSH to travel to the U.S. for experimental therapy.

Once there, Charlie could receive promising, non-invasive nucleoside bypass treatment, though without any certain guarantee of being cured. Court documents have not released the name of the physician or facility associated with the therapy.

Charlie’s parents begged the courts at the local and appellate levels to force GOSH to release him. Both courts sided with the hospital’s opinion that Charlie just be let to “die with dignity,” rather than acquiescing to parental authority.

On appeal at the end of May, the UK Supreme Court sided with GOSH, but granted Charlie’s life–support until the matter could be filed for review by the ECHR. In what was termed an “extraordinary” interim action by that court, life-support was maintained until today and now has been further extended.

In anticipation of today’s ECHR ruling, British media showed the Gard family in a picnic setting on the hospital roof.  Charlie’s eyes were open.

Connie posted the “eyes-open” close-up image of Charlie on Facebook in rebuttal to the UK Supreme Court narrative last week that described her son as

not consistently able to open his eyes enough to be able to see. Indeed, this leads to the difficulty that his brain is failing to learn to see.”

Lady Justice Hale, of the UK Supreme Court, reads ruling that said Charlie couldn’t open his eyes

This was the information that was read aloud by Lady Justice Hale as the defense for keeping Charlie hostage in London and removing his respirator.

Connie is heard on the official audio tape shouting “you’re lying!” five times at the end of the reading of that ominous ruling, before lawyers escorted her out.

How the ECHR will rule is anyone’s guess at this point, but the fact that it granted the extraordinary step of protecting Charlie and taking a closer look at the UK court decisions is hopeful.

And it is the personal motto of Charlie’s parents that, “Where there’s Life, there’s Hope.”

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Baby Charlie Gard: another last minute reprieve for his life

Thanks to what has been termed an “extraordinary” measure by the European Court of Human Rights in Strasbourg, France, Charlie Gard will not be immediately removed from his ventilator.

The 11th hour intervention puts on hold until at least next week a decision by three members of the UK Supreme Court. Earlier this week those justices ordered that Charlie would remain on the Great Ormond Street Hospital (GOSH) ventilator only until today, Friday, as his parents, Connie Yates and Chris Gard, brought a plea asking the European Court of Human Rights to intervene.

The Mirror reported that in an emergency hearing at the High Court, seven judges took up the plea Charlie’s parents filed for “an urgent interim measure to save Charlie’s life under Rule 39 of the Rules of Court.” No decision has been made whether this High Court will take the case for review.  A statement from the court said:

“Today, the European Court of Human Rights decided to indicate to the United Kingdom Government that, in the interests of the parties and the proper conduct of the proceedings before it, they should provide Charlie Gard with such treatment and nursing care as may be appropriate to ensure that he suffers the least distress and retains the greatest dignity consistent, insofar as possible, with maintaining life until midnight on Tuesday 13 June 2017.”

After Thursday’s UK Supreme Court decision, hospital doctors were ordered to maintain an additional 24 hours of ventilator life-support. “A ruling by the European Court of Human Rights would be binding on the UK Government, rather than Great Ormond Street Hospital,” The Mirror reported.

As many pro-lifers are aware, 10-month-old Charlie’s medical condition is grave. He suffers from a rare, genetically-caused disease, so rare there are only sixteen known cases in the world. Charlie’s parents sought to remove him from the hospital to try “nucleoside bypass” oral therapy in the U.S. But the hospital wouldn’t let Charlie leave, and the courts ruled against Connie Yates and Chris Gard, Charlie’s parents.

Thousands around the world have been riveted to the drama of this young couple devoted to their ailing son.  More than 83,000 have pledged funding for that trip in the amount of $1.5 million.

PARENTAL RIGHTS ON TRIAL
An article yesterday in The Guardian by Owen Bowcott noted that the UK Supreme Court panel of Lady Brenda Hale, Lord Brian Kerr, and Lord Nicholas Wilson concluded, “Established human rights law dictates that the rights of a child should take precedence over the rights of their parent.”

The panel apparently were persuaded by GOSH lead attorney, Katie Gollop, who argued:

“The [alternative therapy in America] would take time and over the weeks and months Charlie would be forced to remain in his [precarious] condition: he can’t see, can’t hear, can’t cry, can’t swallow. He has a mechanism that causes his lungs to go up and down. We don’t know whether he suffers pain … the argument being advanced on behalf of Charlie’s parents was that the child should have no voice and it was entirely for the parents to decide. [That’s] dangerous and it’s power without end.”

As many have pointed out, including lawyers for the parents, by adopting GOSH’s claims, the UK Supreme Court is usurping parental rights— claiming that it (with the hospital) is the “voice” for Charlie with the authority to determine his “best interests.”

The public believes that it is actually this erosion of parental authority which is both dangerous and without any end in sight.

As Bowcott reports, attorney Richard Gordon, representing Connie & Chris, had told the UK Supreme Court:

“These are model parents trying to do all they possibly can for the benefit of their child. Their view on what is best for Charlie differs from the court… We say there’s a boundary beyond which the state cannot simply go without the strongest justification.

Charlie’s parents already have the natural authority to make informed decisions to further his life. Six months ago, they wanted to take him overseas to receive oral medication that seems to be successful for treating the mitochondrial depletion syndrome Charlie suffers from. Yet the hospital has restrained Charlie from getting that treatment while he continued to deteriorate—and now they insist he must die!

The question before the European Court of Human Rights over the weekend is whether the government has overreached in making themselves the ultimate arbiter of Charlie’s “best interests.” Attorney Gordon phrased it this way:

The issue is whether the state has the power to intrude on decisions the parents have made in order to mandate that child’s death before it might come to an end.”

Keep praying for Charlie and his long-suffering parents.

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Baby Charlie Gard’s parents feel he is a hostage in hospital, backed by courts

The British Supreme Court delivered devastating news today: they will not hold an emergency hearing to overturn a death verdict for baby Charlie Gard.

The top court reaffirmed lower court rulings from April and May that Charlie’s parents cannot remove him from a London hospital, and that life-sustaining measures be stopped so the ten month old boy might “die with dignity.”

BBC legal commentator, Joshua Rozenberg, tweeted that GOSH must not withdraw life-support before 5pm Friday to allow time to make an appeal to European Court of Human Rights.

Rozenberg

Rozenberg reported that Lady Hale, one of three Supreme Court justices reviewing Charlie’s legal appeal this past week, “says parents can’t insist on treatment that’s not in (the) child’s interests.”

The Independent reported that Charlie’s mother “broke down in tears, shouting: ‘How could they do this to us?’ as she was led from the court by lawyers.”

Charlie is being ravaged by a rare, genetically-caused disease (mitochondrial depletion syndrome), detected when he was 2 months old. An alternative “nucleoside bypass” oral therapy is on trial in the U.S. Charlie’s parents decided they wanted that option.

In a valiant attempt to be able to leave the country with Charlie, his  parents, Connie Yates and Chris Gard, have  battled three courts and the famed Great Ormond Street Hospital (GOSH) where Charlie is on a ventilator.

An MRI in January when the baby was five months old detected no structural brain damage. But in February GOSH wanted Charlie’s life support to end and, moreover, prohibited his removal from the hospital.

 “FUTILITY POLICY” BEATS PARENTS’ RIGHTS
Social media proves that the public is outraged at the hubris of the courts in this matter.  This is the same public that raised $1.5 million dollars in a GoFundMe campaign created by Charlie’s parents to fly him overseas for treatment.

In the April Court of Appeal ruling, Charlie was referred to as having “an awful existence.” The Court opined, “[P]arents may lose their objectivity and be willing to try anything” and insisted that the new bypass therapy was “not viable.”

The Court of Appeal rejected the various arguments of Charlie’s lead attorney, Richard Gordon, that the court had no standing to uphold GOSH against parental authority because Charlie was under no threat of “significant harm” from his parents.

The Court nonetheless insists that it is their duty to make a “best interests” assessment which included whether:

  • the treatment causes pain,
  • the medical condition itself is a severe burden, and
  • it is Impossible to derive benefit from continued life.

“Benefit from continued life” and “severe burden” are undefined terms yet they are the lynch pin of the claim the courts are using to end Charlie’s life. His parents do not believe he is in pain, and they have promised not to inflict any. Their rational medical decision has been crushed by the courts’ haughty claim to be the ultimate arbiter of the value in “continued life.”

Back in 2014, another British hospital had forbidden parents from taking the child out of hospital for a new treatment. (read more here) Britain actually arrested (and later released) the parents who took their ailing child out of the country for a successful cancer therapy that Britain is only now this year beginning to offer.

The therapy worked, young Ashya King is alive and well, yet British courts have not learned their lesson.

And Charlie Gard and his parents are paying the ultimate price.

Thousands are anxiously following this drama and praying that the European Court of Human Rights will play a heroic part in it. Stay tuned.

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In an eleventh hour action, a three member panel of the UK Supreme Court issued a temporary court-ordered reprieve in the case of a nine month old baby whose life support had been scheduled to be turned off at midnight Wednesday over his parents’ strenuous objections.

The panel will announce whether they will take the case on June 8. Until then, life support cannot be removed from Charlie Gard.

The drama centers around little Charlie, suffering from a rare mitochondrial depletion syndrome. His parents, Connie Yates and Chris Gard, have been prevented from removing him from the Great Ormond Street Hospital (GOSH) in London to take him to the United States for experimental treatment.

In two lower court rulings , issued April 11 and May 25, GOSH’s control over Charlie has trumped the parent’s wishes to take their son overseas for nucleoside bypass therapy. Connie told ITV News:

“We have had our parental rights stripped away as if they don’t matter at all. Our son is basically being kept as a prisoner at the hospital.”

Chris told the interviewer, that if Charlie didn’t need “an apparatus blowing air into his lungs I could take him away,” but because he does, “we don’t have a chance and they [GOSH] get to say what happens to him.”

In its coverage of the latest development, The Sun newspaper includes a video news clip that shows an American girl, ”Sara,” who was once immobilized with the same mitochondrial syndrome but is now riding a bike after one year of the nucleoside bypass treatment.

The hospital position—thus far affirmed in court– is that Charlie is already so “ravaged” that he will not “benefit” from the new therapy and he should be allowed to die “with dignity.”

A tremendous public outcry in opposition to the hospital’s position is backed up with $1.5 million pledged on GoFundMe to pay for Charlie’s therapy and trip overseas.

If permission is granted next Thursday by the Supreme Court, another date for a full hearing will be set.

The Daily Mail reports that his parents’ plan is “to try to go to the European Court of Human Rights in Strasbourg if they lose at the Supreme Court.”

The delay in court rulings, while sparing Charlie from being unplugged from the respirator, has prevented him from starting the new therapy.

The ordeal has been, in Connie’s words, “absolutely terrifying” but both parents have vowed they won’t stop fighting for their son, saying: “Where there’s life there’s hope.”

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Charlie & dad; UK court ruling today confirms hospital removal of life-support

A second court has now doomed 9-months-old Charlie Gard to die inside a London hospital.

The UK Court of Appeal ruled this morning against the plea of parents Connie Yates and Chris Gard that they be allowed to take their failing son out of a British hospital for experimental treatment in the U.S.

The decision by Justices Andrew McFarlane, Eleanor King and Philip Sales affirmed a lower court ruling of April 11 that the Great Ormond Street Hospital (GOSH) keep Charlie on the premises and remove him from a ventilator and feeding tube.

As reported by The Guardian, the Appeal Court judges had been otherwise urged by Charlie’s lead attorney, Richard Gordon, that the case raised serious legal issues, including the possibility that Charlie might be being unlawfully detained and denied his right to liberty. Gordon argued, The Guardian reported, that,

“What is really at stake in this case is the state, on a massive scale, intruding in your right to private and family life.”

Charlie entered GOSH in October and was diagnosed as suffering from a form of mitochondrial disease that causes progressive muscle weakness and brain damage. Subsequently, his parents discovered that 18 people in the United States had been treated with an oral medication of naturally occurring compounds to remedy this rare condition. Reports have not identified the doctor who initially agreed to treat Charlie, but it was noted that his parents were aware that no cure was promised.

Attorney Gordon urged that the Appeal Court, “[S]hould not interfere with the exercising of parental rights… and stand in the way of their only remaining hope.”

Over 80,000 people around the world agreed with that position and generously pledged over $1.5 million in a GoFundMe campaign (#Charliesfight) to get him out of the hospital and into the experimental therapy.

GOSH attorneys pressed the Appeal Court to agree that the parents’ proposed treatment for Charlie would result in a “condition of existence which is offering the child no benefit.”

One can only sadly wonder, alternatively, what Charlie’s “condition” would have been if GOSH had released him—months ago– for the new therapy.

His parents never imagined that bringing their baby to a hospital meant they would lose the ability to remove him.  But that is what British courts have now decreed.

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Three UK Court of Appeal judges heard arguments today in the case of releasing a baby boy on life support to get experimental therapy in the United States. Justices Andrew McFarlane, Eleanor King and Philip Sales are expected to issue a ruling Thursday in a case reviewing a decision against the baby’s parents made April 11 by High Court Justice Nicholas Francis.

Imagine yourself in this drama, as the London parents, Connie Yates and Chris Gard.

After their son Charlie was born healthy in August, they brought him to the Great Ormond Street Hospital [GOSH] for care in October. After establishing a diagnosis of a rare and incurable disease, GOSH then prevents them from taking their failing son overseas for a “last chance” experimental treatment!

Parents stateside have watched a related development as Scott and Sheryl Crosier led a crusade to stop DNR orders from being placed on children without parental notice and consent. Their 3-months-old son, Simon, with Trisomy 18, was denied resuscitation and died. Multiple stories of medical bias against medically fragile children were presented to the Kansas legislature, which enacted Simon’s Law in April by resounding margins.

Britain has no such hospital decision-making protection for parents.

After Charlie’s parents tracked down a potential new therapy, they launched a GoFundMe campaign –in January– to raise funds for the expenses of taking their baby overseas, with this plea:

“We are running out of precious time with our baby, he can’t have this treatment in the UK so our only hope now is to get Charlie to America.”

Over 80,000 members of the public responded generously to pledge over $1.5 million to cover Charlie’s expenses… yet GOSH will not let Charlie leave the premises!

For months, Charlie’s parents pleaded that they did not think their son was in pain; insisting that “their fight was not them ‘being selfish’ in keeping Charlie alive but about exhausting all options for potential treatment.”

CHARLIE DETERIORATES
WHILE CONFINED IN LONDON
Today, according to various UK news reports, GOSH attorneys doubled down on their position, telling the Court of Appeal that Charlie “cannot see, hear, make a noise or move,” that it is “hard for anyone to know whether he is pain,” and that further treatment would leave him in a “condition of existence.”

In essence, the hospital asserts the parents are unreasonable to pursue a treatment, cannot tell if they are causing Charlie pain and there’s no “meaningful” reason for Charlie to stay alive.

It is now five months since the funding campaign was started by Charlie’s parents, desperate to get him to the U.S. to be involved in experimental “nucleoside bypass therapy.” They acknowledged it was a move that had limited scientific basis to repair Charlie’s mitochondrial depletion syndrome, but would assuredly aid in the research to help others in the future.

It is hard not to see that Charlie Gard’s deteriorating condition is due in no small part to the stubbornness of a hospital unjustly asserting control, and “usurping the parental function” in the words of the parents’ attorney today in Court.

Followers of Charlie’s saga scratch their heads and say why has the hospital insisted –against the parents’ wishes—that Charlie be removed from life support and “die with dignity?”

The Court of Appeal will have the final word Thursday.

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Baby Charlie Gard: parents fight vs. life-support removal

Today, it was confirmed in the British press that the U.K. Court of Appeal will review on May 23, the case of Charlie Gard– a nine-months-old baby ordered off life support by the High Court last month.

Baby Charlie has been in a London hospital since October, when it was detected he had mitochondrial depletion syndrome, a rare and grave chromosomal condition that weakens his muscles. No successful cure is yet available, but he is eligible to receive an innovative treatment in the U.S. called nucleoside bypass therapy.

London’s Great Ormond Street Hospital, however, won’t allow Charlie’s parents, Connie Yates and Chris Gard, to remove him for the trip overseas– even after more than $1.5 million has been raised with a GoFundMe campaign, to cover medical expenses and travel.

The April 11 court decision by Justice Nicholas Francis backed the position of the hospital “bosses” (as the Brits term the hospital bureaucracy) that Charlie’s ventilator be shut off, and he be allowed to “die with dignity.”

But the modern definition of dignity is too often infected with subjective “quality of life” assessments and rationed care considerations.

The attorney for Charlie’s appeal is Charles Da Silva, and the granting of this appellate review reflects a legal analysis that the parents can possibly prevail.

Connie and Chris are desperate that their parental rights be upheld. They are not claiming the therapy will cure Charlie, but that it has shown some success and Charlie’s participation will aid the research. The parents have stated:

“If there is no improvement we will let him go. We just want to give him a chance. Charlie is still strong and stable. He is growing more beautiful by the day.”

The huge outpouring of support from the public is quite touching, including candlelight vigils, and letters storming Parliament as registered on social media at #charlie’s fight and www.charliesfight.org.

The public believes Charlie’s parents should be in charge of their son… will the Court of Appeal see it that way?

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Charlie Gard, who suffers from a rare, life-limiting chromosomal condition that weakens his muscles, will turn 9 months on Thursday, in the Great Ormond Street Hospital (GOSH) of London.

But the raging battle over treatment options–and whether the government hospital service has sole medical authority over those decisions–is far from over even though a High Court ruling last month defends death for Charlie.

His parents, Connie Yates and Chris Gard, are devastated that their decision-making rights over Charlie’s care have been crushed. They met today’s deadline to file a legal complaint to prevent Charlie from being taken off life-support. According to Britain’s The Sun, a new legal team has been hired and made the required application.

No time line for court acceptance of the appeal has been announced.

Chris and Connie have been constantly at Chris’s bedside at GOSH since October. They are currently being prevented from taking him to the United States for an innovative treatment called nucleoside bypass therapy. The treatment has not yet been published, according to Connie, but has shown success. It involves administering natural compounds to remedy the mitochondrial depletion syndrome Charlie suffers.

Many thousands of well-wishers on social media have encouraged his parents, and pledged over $1.3 million pounds (roughly $1.7 million dollars) to Charlie’s GoFundMe account to cover expenses for the overseas trip.

precious Charlie

Yet on April 11, the U.K. High Court ruled against the parents, holding that GOSH could keep Charlie, shut off his ventilator, and allow the baby to “die with dignity” on the grounds that the proposed U.S. treatment could not “cure” him.

FUTILITY JUDGMENTS
The idea that any court can deny parents the right to remove their son from a hospital seems absurd and unjustifiable. But it’s a logical outgrowth of the reality of rationed care— particularly in Britain with the National Health Service– coupled with changes in medical ethics.

It is sadly no longer the assumption that medical facilities feel bound to sustain a patient’s life. Instead, doctors can delegate treatment as not to be administered because it will

  • not cure the underlying disease; and /or
  • not produce an “acceptable” quality of life.

Such care is alternatively called “non-beneficial,” “medically inappropriate,” or “futile.” A new law in Kansas, Simon’s Law, requires hospitals to disclose any futility policies upon request.

When the medical elite deem that certain patients should be denied medical care, those who object are considered as throwing a “monkey wrench” in the system. Charlie’s parents’ attorney found an email from a doctor at GOSH who called the parents a ‘spanner in the works’ due to their exploration of all medical options available internationally.

GOSH asserts that further treatment would unnecessarily “prolong” Charlie’s suffering. In an interview on British ITV, Connie said:

“If there is no improvement we will let him go. We just want to give him a chance. Charlie is still strong and stable. He is growing more beautiful by the day.”

Appeal judges will be considering whether Charlie’s parents have a reasonable chance of success before allowing a full appeal hearing to be held. The Mail reported the couple’s new attorneys may be looking at using human rights laws to defend their case.

“Before he was hired, the couple’s new lawyer, Charles da Silva, wrote on his firm’s Facebook page that the High Court ruling highlights that not only doctors but judges can get it wrong too,” the Daily Mail reported.

The world’s parents are watching. Stay tuned.

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Charlie Gard with parents

Days after Kansas achieved a landmark law for parents’ decision-making authority governing hospitalized children, another baby and his parents are losing their fight with a London hospital to bring their ailing son to the U.S. for treatment.

On April 7, Kansas’ Gov. Sam Brownback signed “Simon’s Law,” to insure parents can reject hospital DNR (do not resuscitate) orders for their children. The law was instigated by the parents of Simon Crosier– an infant denied the right to live by a hospital DNR — based on bias against Simon’s life-limiting condition, Trisomy 18.

Simon Crosier

During consideration of the bill, and despite documented evidence to the contrary, there were plenty of denials that hospitals would ever overcall parents’ wishes on treatment to preserve life.

Yet consider this currently-unfolding tragic scenario as reported by the BBC and other UK media.

Connie Yates and Chris Gard’s eight-months-old son, Charlie, has been in Great Ormond Street Hospital (GOSH) hospital since October for treatment of a rare condition that causes progressive muscle weakness. Charlie is believed to be one of only 16 known babies ever to have had this mitochondrial-depletion disease.

As reported by the BBC April 3, there was “no evidence that he is in pain on a regular basis.”

Charlie’s parents have now raised over 1.3 million pounds through a “GoFund Me” campaign to be able to bring Charlie to the U.S. for pioneering treatment called nucleoside therapy.

Ms. Yates said, “the support and phenomenal kindness of countless people has been a source of strength.”

“We just want to have our chance. It would never be a cure but it could help him live. If it saves him, amazing. I want to save others. Even if Charlie doesn’t make it through this, I don’t ever want another mum and their child to go through this.”

But the London hospital won’t let them remove Charlie, concluding there is no “accepted cure.”

The parents took legal action but the High Court sided with the hospital on April 11. The BBC headline was dire, “Doctors can withdraw life support from a sick baby with a rare genetic condition against his parents’ wishes.”

The language used to officially overcall the rights of parents uses now-all-too-familiar terms.

  • The GOSH attorney argued that “world-renowned” experts agreed the child should not be given long-term life support as his “quality of life” is “so poor.”
  • UK doctors have insisted there is no “accepted cure” and Charlie should be allowed to “die with dignity.”
  • The attorney appointed to represent Charlie, said proposed treatment in the U.S. was “purely experimental” and continuing his life support would only “prolong the process of dying”.

Justice Francis

High Court Justice Nicholas Francis of the Family division made the fateful ruling that Charlie be moved from life-support to a palliative care regime and be allowed to “die with dignity.” And even after Justice Francis admitted that experimentation might benefit medical science, he asserted it could not “benefit” Charlie.

Justice Francis had seen Charlie at GOSH, and said it has been his “sad duty” to apply the law relating to disagreements between parents and hospitals. He expressed his “complete conviction” that it was in the “best interests” of the child to let him “slip away.”

But this was no mere settlement about what GOSH could or should provide.

This is an imprimatur on whether a child with a life-limiting condition, once admitted to a hospital, can leave!

On Tuesday, April 25, in the House of Commons, MP Ruth Cadbury spoke up for the plight of her constituents, Charlie’s parents. She urged the justice secretary to use “any powers to intervene…to do the right thing.”

MP Cadbury

The plea was immediately rejected.

Charlie’s parents, Chris and Connie, “are devastated” by the decision, and have until Tuesday, May 2, to file an appeal, said their attorney, Laura Hobey-Hamsher.  “They are struggling to understand why the court has not at least given Charlie the chance of treatment in America.”

The neurologist who would oversee the experimental treatment had testified to the court that while Charlie was in the “terminal stage” of his illness, treating him would be compassionate.

That notwithstanding, the hospital refuses to discharge Charlie and the High Court has decreed Charlie move to “a palliative regime.”

Tragically, British hospitals and government have ruled that Charlie Gard must die.

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Sheryl Crosier and Gov. Brownback share a spontaneous hug after the official signing of Simon’s Law.

Appreciative parents, legislators and pro-life /pro-family advocates surrounded Kansas Gov. Sam Brownback this morning as he formally signed Simon’s Law.

Simon’s Law passed the Kansas Senate 29-9 on March 16 and the House by 121-3 on March 31. The victory culminated a grassroots campaign among families whose children with chromosomal disorders were denied life-saving care.

Simon’s Law is a very significant pro-life measure in the area of selectively “rationed” care and medical discrimination against children with life-limiting diagnoses. Simon’s Law:

  • validates both the medical advisory role and parental rights;
  • ends “secret” DNRs based on “quality of life” judgments;
  • buttresses dignity for children with disabilities;
  • exposes policies denying life-saving care; and
  • combats erosion of the Sanctity of Life ethic in our culture.

As catalogued in an award-winning 2014 short documentary, “Labeled,” a frightening number of children with chromosomal disorders are denied life-saving medical treatment.

Trisomy 18, Trisomy 13, and related genetic disorders have been routinely labeled “lethal” and “incompatible with life.” As a result, children with these conditions almost automatically receive DNR (Do Not Resuscitate) orders without parental consent.

That was the experience of Sheryl and Scott Crosier, who lost their infant son, Simon, six years ago.

Kansas pro-life legislators surround the Crosier family (left) as Gov. Brownback officially signs Simon’s Law with Frank & Ann Barnes at far right.

Simon had a diagnosis of Trisomy 18. At age three months, he had what proved to be a fatal apnea attack in the hospital.  While his parents held him, they waited in numbing shock as no emergency aid came to the rescue.

Later, Sheryl and Scott found that a DNR order was in Simon’s chart, which neither parent knew about nor approved.

After Simon’s death, Sheryl and Scott reviewed his chart and discovered Simon had only been given “comfort feeds” which are not sufficient for growth and development. He had also been given medications incompatible with his apnea. These revelations fueled their anger and their resolve to do something.

A LAW TO ALERT PARENTS
The Crosiers believed legislation was needed to

  1. stop the issuance of unilaterally-issued DNRs, and
  2. expose the practice of hospital futile care policies dictating scenarios in which life-saving treatment is withheld or withdrawn.

They began in Missouri in 2014, but certain medical interests were opposed and the measure has not yet been able to secure committee passage.

Kansans for Life  took up the original bill last year, and redrafted it with aid from NRLC’s Robert Powell Department for Medical Ethics. After an impressive win in the Kansas Senate, there was insufficient time for action in the House in the 2016 legislative session.

This year, the bill was refiled amid delicate negotiations between Kansans for Life  and hospital staff and hospital ethicists. The result was a more narrowly focused bill that was able to bridge entrenched medical objections.

The Crosiers approved the revisions and came to testify at the Statehouse with 12-year-old son Sean. The sadness and sense of betrayal of Simon’s death is still very real for them. Sean testified about how his excitement at being a “big brother” tuned into “pain and heartache” that still endures.

Parents of Trisomy kids rejoice in the signing of Simon’s Law

NATIONAL IMPACT
Frank and Ann Barnes from North Carolina also traveled to Topeka to celebrate the bill signing today. Their daughter Megan, was profiled last year in the NRLC News Today

Yes, Megan had limitations, but her mother described her as “content” and “knew she was loved.” At age nineteen, Megan was hospitalized for virus-caused dehydration, in a pediatric intensive care unit at a major teaching hospital. She was never to return home.

Due to her Trisomy 18 condition, a DNR had been verbally ordered into her chart by an “attending” physician without parental notice or consent. Megan was dead four days later.

Ann and Frank are actively involved with S.O.F.T., a nationwide family support group for Trisomy 13, Trisomy18, and related disorders. At today’s signing and press conference, Gov. Brownback invited them to talk about their daughter and the impact of her death.

As of July 1, Simon‘s Law in Kansas will mandate:

  1. Parents receive both written and verbal notification before a Do Not Resuscitate Order (DNR) is placed in a child’s medical file. Parents can then allow the order– or refuse it orally or in writing. Court access for disputes is delineated and the child remains safe during resolution.
  2. Parents and prospective patients of any age have the right to request and receive hospital policies concerning “denial of life-saving care” (sometimes referred to as medical futility policies). There is no mandate that hospitals have such policies.

See KFL Simon’s Law video here and more on the KFL youtube channel.

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