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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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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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Gov. Brownback

Gov. Brownback

Late this afternoon, pro-life Gov. Sam Brownback made Kansas the eighth state to take action to address shocking revelations about organ and tissue procurement from abortion clinics. Tapes of two undercover stings of top abortionists from Planned Parenthood can be found here.

The Governor issued the following statement: “Kansas remains committed to a culture that respects the dignity of life at all stages. Recent videos show Planned Parenthood employees treating the unborn as commodities as they discuss the sale of tissue and organs. This does not reflect the culture of life most Kansans want.”

Brownback called on the Kansas Board of Healing Arts, with the co-operation of the Kansas Department of Health and Environment (KDHE) “to investigate, as part of its inspection of office-based surgical practices, whether any Kansas facility is engaged in the inhumane practice of selling tissue and organs from unborn children who are aborted.”

Three abortion businesses operate in Kansas:

  • Comprehensive Health/Planned Parenthood in Overland Park is licensed as an ambulatory surgical center under KDHE;
  • SouthWind Women’s Center in Wichita and Center for Women’s Health are the offices of Kansas-licensed physicians and are governed by some surgical guidelines and limited, announced inspection by the Healing Arts Board.

Unfortunately, all three clinics should be governed by the 2011-enacted abortion clinic licensure law that had been sought for 10 years, and had been twice vetoed by former Gov. Kathleen Sebelius. However, a local judge enjoined it and stalled  any progress on it at a hearing Friday (Read more here).

INHUMANE DISMEMBERMENT ABORTIONS AT ISSUE
The first video discusses harvesting of organs and limbs, but of key importance is the fact that such retrieval is totally dependent on the unborn child still being ALIVE during the abortion.

In the video released July 14 (see here) Planned Parenthood’s medical director, who trains all their abortionists, discusses performing abortions past the midpoint of pregnancy. In the video, she describes “crushing” the unborn child with forceps in distinct areas, with the “guidance” of ultrasound in order to preserve certain requested organs and limbs.

medical arm with abortion toolWhat she repeatedly describes is a DISMEMBERMENT ABORTION –performed with a financial secondary motive. Kansas banned dismemberment abortions in April but yet another activist judge has blocked the ban from going into effect. (Read more here)

In such dismemberment abortions, the barbaric hacking off of bodily limbs and organs is done to a LIVING, well-developed little boy or girl while still inside his or her mother’s womb.

The brutal truth of fetal harvesting is that the unborn child MUST BE CHOPPED UP WHILE ALIVE to extract “useable” pre-ordered organs: hearts, lungs, livers, heads, etc.

Gov. Brownback’s statement today concluded thusly,“Human life has dignity at all stages of life. Senate Bill 95, banning dismemberment abortion in Kansas, prevents the barbaric procedure of dismembering an unborn child. We must remind ourselves and others that unborn children are just that – children – with certain inalienable rights that we must respect and protect.”

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Wall Street Journal photo

Parents care for preemies, photo by Patrick Giles, WSJ

For those who enjoy learning about how the tiniest human “patients” are being ever-better treated, today’s Wall Street Journal
article “What Parents can do to help Preemies” is must reading.

NICUs (Neonatal Intensive Care Units in hospitals) are little seedbeds of research on how to assist babies who were delivered too early. The generous care and dedication that babies have received from NICU staff, especially nurses, is truly commendable.

However, a trial program is demonstrating that daily physical care by the preemies’ parents is not only preferable, it is a win-win, according to the Journal’s Dana Wechsler Linden.

“Typically, babies born prematurely, who might weigh little more than a pound, are considered too fragile for anyone but highly trained doctors and nurses to care for,” Linden explained. But a pilot program at Toronto’s Mount Sinai Hospital (which has spread to 20 hospitals in Canada and 10 in Australia and New Zealand) took a very different approach. Parents took charge of their preemie’s care for at least eight hours a day.

The pilot program showed that 42 premature newborns cared for each day by their parents gained 25% more weight and were nearly twice as likely to be breastfeeding when they went home as those taken care of primarily by nurses.

A potential fear that multiple caregivers would increase infections (that can be so deadly for these tiny 1-2 pound babies) is negated. While 11% of the babies in the nurse-only group had infections, the parent-assisting group had none!

In the pilot  program parents were successfully trained how to handle fragile babies and the medical equipment they use. And though the initial steps were a bit daunting, a wonderful benefit was reaped not only by babies but also by their parents.

For example, parents of preemies are, understandably, concerned about their baby’s fate. By being involved, not only did the preemies greatly benefit, parental stress levels went down.

“This started because parents told me they feel hopeless, helpless,” said Shoo Lee, chief of pediatrics at Mount Sinai, who led the group that developed the new approach.

“Within the first three days I learned everything I needed to do,” Cynthia Schaeffer, whose son, Joshua, was born after 26 weeks of gestation at just over 2 pounds, told Linden. “I started feeling like a mother.”

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baby with dollarsThe periodic complaint/report on money spent to defend pro-life laws in Kansas was posted by the Associated Press Tuesday, part of the continuing mainstream media’s ‘framing’ that there are too many new pro-life laws with big legal price tags.

The first story was headed, “$1.2 million paid in attorney fees to defend anti-abortion laws.”

“To defend” seems like a hopeless challenge, doesn’t it? The truth is, the state has won all lawsuits concluded so far, as well as additional concessions in ongoing litigation!

Since not even one legal victory was mentioned in the story, I requested a correction. Kansans for Life asserted that the public has little interest in the names of the law firms, but rather deserves at least a hint of the results of their tax expenditures. A.P.’s updated story was reworded slightly to include that two laws had been “successfully defended.”

But beyond the frustrations of incomplete and inaccurate mainstream media reporting about abortion, it’s important to understand the context of those legal fees and why pro-lifers should not– and do not– fear passing sound laws.

Since his inauguration in January 2011, Kansas Gov. Sam Brownback has signed nine pro-life laws and four state budgets that include pro-life provisions. Subsequently, abortion interests have filed 10 legal challenges to three laws and one budget provision but Kansas is the big winner. Let’s examine the lawsuits in three segments.

KANSAS’ LEGAL WINS

1. Of the nearly $1.2 million total over four years’ time, $425,000 was expended opposing Planned Parenthood of Kansas-Mid Missouri. Kansas’ position prevailed in the Tenth Circuit Court of Appeals after some very bad examples of judicial activism in the lower court. This necessitated high-powered legal skills.

U.S. Rep. Tim Huelskamp

U.S. Rep. Tim Huelskamp

Upheld was the Huelskamp-Kinzer provision to the annual Kansas budget. Instead of going to Planned Parenthood, nearly $400,000 in annual federal Title X family planning is now designated as prioritized to full-service public clinics and hospitals that serve the patients from infants through the aged, instead of going to the special interest businesses.

On balance, the cost was a good investment, when considering the legal fee is nearly recouped in one year’s time, and then every year after when the Title X money is renewed.  Not to mention that tax money is dedicated to true health care, not abortion referrals.

KFL President Lance Kinzer

KFL President Lance Kinzer, former House Judiciary chair

2. In 2011, Kansas passed a law preventing private healthcare dollars from automatically paying for elective abortions. To secure that victory cost $149,000 in legal fees. The plaintiffs (one a Planned Parenthood employee and one a N.O.W. lobbyist) dropped their suit in May 2012, before the trial began.

It’s hard to estimate overall cost benefits in this one, but clearly the win goes to employers who don’t have to compromise their conscience by providing employee insurance that would be used for abortions, and lessening the amount available to cover bona fide employee medical needs. The victory also helps rebut activists’ demand that abortion be “mainstreamed” into medicine.

3. The remaining $620,000 of the $1.2 million in legal expenses has been used to deal with a variety of attempted injunctions and lawsuits against two laws (a clinic licensure law and an “omnibus” law covering a variety of restrictions).

During extensive and ongoing negotiations, Kansas’ extremely knowledgeable attorneys forced the abortion team to abandon some of their initial challenges, including opposition to informed consent materials about the humanity and pain-capability of the unborn.

These are important concessions that contribute to the overall national field of abortion litigation. Once a claim is rescinded in one court, it carries possible precedential weight in other courts.

In 2011, Kansas enacted a long-sought abortion clinic law initiating state licensure, inspection, and injury reporting. It also required abortionists to have local hospital privileges and banned “webcam” abortions.

Two Kansas City-area abortion clinics sued in federal court. When they lost their bid for a temporary injunction in federal court, they tried to charge Kansas $220,000 for 6 weeks’ legal work! (That makes the 3 year fee of $425,000 in item #1 look like a steal by comparison!) But Kansas’ defense lawyers prevailed and the abortion attorneys did not get that money.

Unfortunately, an activist state court did block the licensure law on behalf of the abortion father-daughter duo doing business as the Center for Women’s Health. After a long stall, the lawsuit against the licensure law is now moving on a fast track. The state of Kansas has asked the judge to rule out three claims of equal protection infringement, as questions of law.

In 2013, Kansas passed the Pro-Life Protections Act which removed tax advantages for abortionists, updated informed consent statutes and initiated a ban on sex-selection abortions. The same abortionist duo suing the licensure law also sued this law, and secured a temporary injunction on emergency and weblink provisions. Planned Parenthood also worked to get an injunction in federal court on the weblink requirement.

Kansas prevailed in getting both injunctions dissolved, forcing all clinics to post a link to state materials about gestation. Our talented defense lawyers won the first claim against the suit challenging the entire Pro-Life Protections law and further litigation is proceeding in district court.

Legal victories come at some cost, but what price is there for saving unborn children?

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