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Posts Tagged ‘medically fragile’

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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Sen. Jacob LaTurner, chair of Senate Federal & State Affairs committee, with Zach & Brenda Spurlock

Today’s hearing on “Simon’s Law” in the Kansas Senate Federal & State Affairs committee room was a tale of two little boys.

One dear boy, Simon, was alive only in cherished memories detailed to the committee. Another, Zach, –whom medical experts claimed would never be more than a “vegetable”—jiggled and squirmed in his seat and would smile at various people in the room, and say “Hi!”

Baby Simon

Baby Simon

Today, Sheryl Crosier was the key witness as Kansas renews consideration of Simon’s Law, SB 85. Simon’s Law passed the Senate 37-3 last spring but didn’t get through the House process in time to become law. Thus hearings started anew this year. Simon’s Law preserves the rights of parents in the issuance of “Do Not Resuscitate ”(DNR) orders to minors.

Sheryl very poignantly recounted (or, perhaps more accurately, relived) how her baby son, Simon, died six years ago in front of her and her husband, Scott, at the hospital where he had lived his entire young, three months of life.

Simon & family

Simon Crosier with family

After the heartbreak of burying their child, the Crosiers discovered that the reason baby Simon was dead was because, without their permission, a “Do Not Resuscitate” (DNR) order had been placed in his medical chart.  The bad news mounted: the hospital had a written “futility” policy concerning when life-sustaining procedures would not be given.

Simon had been diagnosed with Trisomy 18 disorder three days after birth. For many years, such children were immediately labeled as having a lethal condition, and were not treated. The medical community is slowly starting to abandon labeling children like Simon as “incompatible with life,”  according to a brand new article this week that appears in JAMA (the Journal of the American Medical Association.)

Thus began the Crosiers’ crusade to alert parents, especially those with medically fragile children, that a death by secret DNR could happen to them.

Along the way, other parents, researchers and doctors have joined in the crusade to pass Simon’s Law.

The case was strongly made in committee today with a large number of proponents, including Kansas Lt. Gov. Jeff Colyer, who is a surgeon. Four medical groups have supported Simon’s Law since last year. The committee will “work” the bill for passage as early as this coming Monday.

tatum-and-zach

Tatum & Zach Spurlock outstripped “expectations”

The truly beautiful side note to the hearing was the presence of a boy who has far outstripped his “expectations.” Kansans Jack & Brenda Spurlock, whose nine- year-old daughter Tatum has outlived her “fatal” diagnosis of Trisomy 18, came to the Capitol to testify for Simon’s Law.

Tatum was not present today, due to the flu, but her brother, 7 1/2 year-old Zach, melted the hearts of the whole room.

Zach was born without a significant portion of his skull, and with a large occipital encephalocele that contained a portion of his brain. He was predicted to have seizures and other afflictions his whole life. Not so! Zach stayed throughout the one-hour hearing, exhibiting “best behavior.” 

The committee truly witnessed the joy of  a life that has too often been labeled as not worth sustaining, and the tragedy of taking a life due to preconceived “quality of life” judgments.

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