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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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Simon's Law hearing Sheryl Crosier

Sheryl Crosier, Simon’s Law

The Kansas legislature reconvened for the second half of the session and Kansans for Life testified in hearings for two pro-life bills.

On Thursday, the Senate Public Health & Welfare committee held a hearing on SB 437, Simon’s Law, a bill to insure that the issuance of any Do Not Resuscitate order (DNR) for a minor has parental consent.

Since baby Simon’s death five years ago due to unjustifiable denial of care, Sheryl Crosier, his mother, has been in touch with a myriad of other families whose

medically fragile children were harmed and/or denied medical resuscitation– due to negative “quality of life” value judgments from physicians and hospitals.

Simon’s Law, SB 437, was introduced by Sen. Jacob LaTurner (R-Pittsburg), who thanked Crosier for her commitment to the issue and her bravery in describing for the committee the events involved in her son’s death.

Sen LaTurner

Sen. Jacob LaTurner

Her testimony was indeed both shocking and gut-wrenching for those in the packed committee room: Sheryl and her husband discovered–after Simon’s demise– that life-sustaining care had been denied to him due to a secretly-placed DNR based on his status as an infant with Trisomy 18. (See details here and read more in her book: I am Not a Syndrome, My name is Simon.)

Crosier’s experience triggered the production of a 2014 film  called Labeled,” on the topic of the medical discrimination against children with Trisomy 18, Trisomy 13 and related chromosomal disorders. (See info on these conditions here.)

Kansans for Life is promoting Simon’s Law, on behalf of these families– as well as physicians and researchers– who want parents assured of “an environment that allows medical decisions to be made in an ethical and transparent way.”  (Read KFL testimony here, and numerous heart-breaking actual accounts submitted to the committee here.)

The committee will likely work on the bill next week.  Contact info is here for Senate Health committee members, so you can urge them to pass Simon’s Law, SB 437.

U.S. Rep. Tim Huelskamp

U.S. Rep. Tim Huelskamp

BILL THAT PLANNED PARENTHOOD HATES
On Wednesday, March 2, the Senate Ways & Means Committee heard testimony from Kansans for Life supporting SB 436. This measure would make permanent the way the state health department, KDHE, assigns grants using Title X federal funding.

First passed in 2007 as the Huelskamp-Kinzer amendment, SB 436 prioritizes that full-service public clinics and hospitals are first in line for Title X ‘reproductive-services’ money. Remaining money is secondarily prioritized to private, full-service clinics and hospitals.

The emphasis is on providing comprehensive health care for Kansans who qualify for Title X, and for strengthening ‘safety net’ health clinics.

The legislature annually passed the Huelskamp-Kinzer amendment only to have it vetoed by pro-abortion governors, until pro-life Gov. Sam Brownback took office in 2011.  It has been approved in the budget every year since.

Planned Parenthood of Kansas Mid-Missouri (PPKMM) sued the Title X prioritization because they cannot provide the comprehensive care now required. During litigation, however, PPKMM continued to receive over a million dollars when Kansas was forced by an activist court to continue contracting with them.

The Kansas Attorney Generals’ office strongly defended the measure in federal district court, and on appeal. Dr. Robert Moser, then-KDHE Secretary who was named in the lawsuit, justified the state’s position, stating,

“Title X was not intended to be an entitlement program for Planned Parenthood.”

Sen. Caryn Tyson

Sen. Caryn Tyson

The Title X prioritization of the Huelskamp-Kinzer amendment was finally upheld in a ruling from the federal Tenth Circuit Court of Appeals in March 2014. After PPKMM’s loss, they dropped further appeals. Read more here.

With 26 Senate co-sponsors, Sen. Caryn Tyson (R-Parker) introduced SB 436, in which the Title X budget prioritization is put permanently into statute.

KFL testimony supporting SB 436 is here. Contact info is here for Senate Ways & Means committee members to encourage passage of SB 436.

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Simon bookCan a DNR (Do Not Resuscitate) order be placed in your child’s medical file without your knowledge? YES!

Can your child be denied life-sustaining care based on a quality of life assessment by a hospital ethics board? YES!

Are both situations outrageous and scary? YES!

The remedy? Simon’s Law, a pro-life bill filed and being promoted in 2 states: Kansas and Missouri.

Simon was a 3-month-old precious boy who was starved, given antagonistic medication and not resuscitated due to the secret placement of a DNR order on his medical chart.

And why? Because Simon was labeled as suffering under a “syndrome”of an extra gene, Trisomy 18… and thus discriminated against as not worth life-sustaining care.

Simon’s family watched as he expired before their eyes and only later discovered in horror that a DNR had been placed on his chart which they in no way wanted or had even discussed.

Simon’s Law would do 2 simple things:

  1.  prevent any medical facility or practitioner from secretly placing a DNR order for children under 18 years of age without written consent of at least one parent or guardian.
  2. require that a facility disclose, upon request, any existing written policy on denial of life-sustaining treatment.

Under the second provision, a family would be able to better determine whether their child is at any risk of any refusal to treat (i.e.”futility” policies) at the medical facility. (read more about such policies here and here)

Imagine your eight-year-old sustains critical injuries from a skateboard collision,  or your sixteen-year-old is involved in a car accident with life-threatening injuries. Wouldn’t you want to be fully engaged in the decision making, rather than trusting unknown medical professionals without any mandate to seek your consent for non-treatment?

ALERT: Kansans for Life is seeking additional support for Simon’s Law this week from interested citizens and health care personnel for an upcoming Senate hearing. Email any testimony to kfltopeka@gmail.com and include full contact information.

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