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Posts Tagged ‘“incompatible with life”’

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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Kansas parents that we hStop dnrave been conversing with about an important new bill, Simon’s Law, are absolutely stunned to discover that a DNR (Do Not Resuscitate) or DNAR (Do Not Attempt Resuscitation) order can be placed in a child’s medical chart without the permission of any parent.

Simon’s Law is named for a case of this tragic deception which happened to the Crosier family five years ago. Simon, their three months old son with Trisomy 18, died due to a DNR order that was neither discussed with, nor permitted by, his parents. (Read more here and here.)

Simon’s death happened in St. Louis, but his dad is a Kansas native, with many extended family members who are Kansas residents.

While KFL was actively educating about Simon’s Law, new relevant scientific articles about this DNR/DNAR issue have been published. The article I will discuss here, published March 17 in BioEdge, reveals the shocking results of a survey of neonatologists— those pediatricians with special training in newborn intensive care. BioEdge writes:

“The authors of the article are sympathetic to the view that unilateral DNAR [DNR] orders are in certain circumstances ethically permissible. What’s more, they found that most American pediatricians agree with them.”

In essence, physicians entrusted to evaluate and treat infants in critical care situations willingly expressed their opinions that it is ethical for them to deny care “unilaterally” (without parental consultation and permission).

Granted, these survey results came from just one sixth of the 3,000 members of the American Society of Pediatrics Section of Perinatal Medicine who were sent surveys, but it surely is frightening.

Sheryl & Scott Crosier treasured their son, SImon

Sheryl and  Scott Crosier treasured their son Simon

  • 77% said it was ethically permissible to issue a unilateral DNAR order where doctors were treating an infant for whom survival was felt impossible;
  •  61% said it was ethically permissible when survival was felt ‘unlikely’;
  •  57% said a unilateral DNAR would be permissible if no curative treatment was available;
  • 25% said a unilateral DNAR order would be permissible based solely on neurological prognosis.

The many testimonies submitted to the Senate Health & Public Welfare Committee in support of Simon’s Law demonstrate that children have tragically died based on negative “quality of life” assessments by the medical community– particularly children with chromosomal disorders—even Down Syndrome.

Some physicians, in the context of highly expensive remedial treatment, believe they are responsible for “taking the matter in hand” and ending the life of a child– whom they consider a burden– but whom the parents see  as a gift.

Highly negative medical labeling–profiling– of both the unborn and newborns as “incompatible with life,” regularly occurs, in spite of evidence to the contrary from those with such conditions who survive for months, years and even decades.

On its face, a DNR/DNAR medical order for a minor that is issued without written permission indicates a desire to

  1. sidestep obtaining written parental consent, under the excuse of the emotional difficulty in discussing the matter; or
  2. avoid admitting that the physician/facility is committed to denial of life-sustaining treatment; or
  3. both.

Simon’s Law will protect lives threatened by medical discrimination and usurpation of parental rights by pediatric specialists claiming an “ethical” basis for denying life-sustaining care.

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