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Posts Tagged ‘Megan Barnes’

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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Simon napping with his father, Scott Crosier

Scott Crosier napped with baby Simon

Recent posts have revealed the facts surrounding secretly placed “Do Not Resuscitate” (DNR) orders without parental notice or consent that resulted in the deaths of Simon Crosier and Megan Barnes. (see here and here)

Testimonies from both families, as well as detailed testimonies from other families and supportive physicians and researchers, were submitted to the Kansas Senate Public Health and Welfare committee urging enactment of ‘Simon’s Law.’ (see here)

By an overwhelming bipartisan vote of 37-3 on March 22, the Kansas Senate passed Simon’s Law to

  1. insure no DNR order can be issued to a minor without consent of parents/guardians, and
  2. require that a hospital/medical facility, upon patient request, disclose any ‘futility policies’ in place.

The House can take action on the bill when the Kansas legislature reconvenes April 27.

There was no opposition presented against Simon’s Law in committee. While not one medical group or facility testified at the Senate hearing, a stealth campaign to kill this bill is now being waged by lobbyists for various hospitals.

Their position is that Simon’s Law is unneeded (or even harmful!) and that reasoning was encapsulated in an unsigned March 29 editorial by the Topeka Capital Journal (TCJ), a prominent Kansas newspaper.

Neither proponents of the bill, nor Kansans for Life, were contacted by TCJ to explain the need for Simon’s Law within the current climate in which certain newborns, and children of other ages, are labeled “unworthy” of life-sustaining care.

BAD FACTS= BAD EDITORIAL
The TCJ editorial asserted that, currently, DNR “orders aren’t to be placed in a minor’s chart without full disclosure to the parent or guardian.” 

However– in fact– disclosure does NOT always occur, as the cases brought to the Senate Health committee illustrate. In these instances, later verified by researchers, children lost their lives and necessary medical services, because negative value judgments were made about the children with chromosomal abnormalities.

Furthermore, “disclosing” a DNR is just stating that a DNR is being imposed; it is not seeking permission.

The TCJ editorial tries to claim the high ground by asserting Simon’s Law could “inflict unnecessary suffering upon children.” And as the final kicker, the editorial scolds –in the identical manner pro-abortionists do– that legislators are “primarily untrained in the area of medicine” and “shouldn’t play God.”

Scott Crosier, the father of Simon Crosier, for whom the Simon’s Law legislation is named, rebutted the editorial in a letter published April 9. “Unfortunately, hospitals’ secretive futility policies DO give them the ability to place DNRs [on minors] without [parental] knowledge or consent despite the rhetoric presented.”

Simon’s dad painfully experienced what the TCJ editorial seems ignorant of: that denial of life-sustaining treatment is being applied based on value chromosome sloganjudgments, specifically by those “with medical training.”

FUTILITY JUDGMENT BASED ON OPINION
Mr. Crosier wrote, “For clarification, a futility policy allows a hospital and its physicians to make any decision regarding the treatment of a patient they deem to be futile without any input from the patient or family. Bottom line is, hospitals are making business decisions when the lives of our children are at stake. Our physician’s favorite statements when Simon was in the NICU were, ‘I don’t know,’ ‘Not for Simon,’ and ‘Incompatible with life.’  Cold harsh comments to hear regularly when you are pleading with them to do everything they can to help your son.”

Mr. Crosier fundamentally disagrees that legislators need any medical training to recognize the need for Simon’s Law:

If the hospitals are not going to be completely open and transparent concerning their policies, then we clearly need our government to step in and protect our rights as parents.”

TCJ did not include this last relevant paragraph from the letter they published from Simon’s dad: “The physicians and hospitals have government protections through many federal and state laws but for some reason Simon’s Law would be a burden for them to get written consent from a parent for a DNR? This makes NO SENSE! If you want to protect your child’s human rights and your parental rights, supporting ‘Simon’s Law’ really is a no-brainer.”

Anyone with even limited experience with being hospitalized knows that the facilities and doctors do indeed insist on signed permission, often multiple times in just one stay. The hospital lobbyists really have no credible excuse for not getting written parental permission, which is presumably why they never came to a public podium to testify about Simon’s Law.

Crosier’s unpublished paragraph completely undercuts the entire TCJ editorial. Is that why it was omitted?

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