Feeds:
Posts
Comments

Posts Tagged ‘Sheryl Crosier’

Sheryl & Scott Crosier treasured their son, Simon

Sheryl & Scott Crosier lost their son, Simon, to a secret DNR placement

“Simon’s Law” is named for a medically fragile baby born with Trisomy 18 and apnea (breathing difficulty), who died when resuscitation was denied.

His devastated parents, Sheryl and Scott Crosier, only learned later that Simon’s hospital chart contained a DNR [Do Not Resuscitate] that was never discussed, much less permitted by them. They have mounted a grassroots crusade to alert parents and enact this law to protect parents’ rights.

Simon’s Law has the support of numerous pro-life medical groups and professionals, as well as other families who discovered (after the fact) that they also lost a child to a secretly-placed DNR. (see here)

Unfortunately, the medical climate is not tilted in the Crosiers’ favor. A survey of pediatricians last year found that up to 73% of them would issue DNRs without parental permission to children with severe, life-limiting conditions.

Sheryl was recently contacted by a Texas mom with the disturbing account that her 18-month-old son went to the hospital with RSV (a rather common illness) and the hospital tried to place a DNR in the toddler’s chart! The child had no other medical problem or condition but the RSV.

Simon’s Law will insure that DNRs will not be issued unilaterally by physicians and hospitals. All parents need this law–and not only those whose children might be medically discriminated against as lacking “quality of life.”

Brenda Spurlock & Son Zach with Sheryl Crosier

Brenda & Zach Spurlock with Sheryl Crosier(r) support Simon’s Law

KANSAS TESTIMONY
The following is the story of a Kansas mom, with special needs children, who came to testify in favor of Simon’s Law.

Seven and a half years ago, a medically fragile baby boy, Zachariah, was born in a Kansas hospital.

He lacked a significant portion of his skull, and a portion of his brain had developed into a separate sack attached to the back of his head.

Due to those challenges, his hospital chart contained a do-not-resuscitate order (DNR).

A few days after his birth, Zach suffered a long period of apnea and because of the DNR, he was removed from monitors, wrapped in a blanket, and handed to his biological mother to die.

Several minutes into the episode, baby Zach self-resuscitated. At that point his young parents asked medical personnel to do all they could for him.

Zach was alive, but needed to remain hospitalized. His unmarried mom had been matched by the perinatal experts at Alexandra’s House in Kansas City with a “mentor,” Brenda Spurlock, to support her during the pregnancy and afterwards.

Brenda had experience navigating a complicated NICU situation as her own daughter, Tatum, had also been born with a sac bulging from the back of her head. In addition, Tatum had been given a “fatal” diagnosis of Trisomy 18, which included neurological and physiological defects.

As Zach approached one month of age, his birth mom felt increasingly unequipped to care for him. Brenda and her husband Jack adopted Zach, welcoming him into their family of seven children.

Zach & Tatum Spurlock

Zach & Tatum Spurlock

CHILDREN EXCEED DIRE DIAGNOSES
Brenda Spurlock came to the Kansas Capitol Feb.16th to testify in support of Simon’s Law. She told the Senate Federal & State Affairs Committee:

     “We were warned Zach’s life would be very short. In fact, we were told he would likely not live out the month and that the best case scenario was a 3-5 year life span, fraught with life threatening seizures and bouts of pneumonia. We were also warned he would exist in a semi-vegetative state.

Yet he has never suffered a single seizure, nor has he ever experienced a bout of pneumonia. 

The portion of his brain that was removed was thought to contain his visual cortex and we were told he would be blind, but he sees! 

He has cerebral palsy, autism, profound global delays, and hemiplegia on the right side of his body. But he is a delight. He does not know a bad day, only a bad moment, and then he puts that award winning smile back on his face and marches on! 

Our daughter, Tatum, has had full genetic testing and her particular chromosomal tripling has never before been documented or journaled. Her life was judged by an unknown…and they were wrong! Tatum has far surpassed any of the prenatal and postnatal prognoses that were given to us, and on February 10 she celebrated her 9th birthday.

When we adopted Zach, we removed the DNR that had been placed in his medical records. 

I think every parent of a medically-fragile child should be aware of the choice to sign a DNR for their child, and I would hope that choice could be offered tactfully. But I stand firmly against medical professionals making a life choice for an infant or child based on a prenatal diagnosis, or set of tests.”

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »