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!”
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.
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.
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.