Feeds:
Posts
Comments

Posts Tagged ‘Crosier family’

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.

Read Full Post »

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.

Read Full Post »