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.
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
- stop the issuance of unilaterally-issued DNRs, and
- expose the practice of hospital futile care policies dictating scenarios in which life-saving treatment is withheld or withdrawn.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.
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:
- 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.
- 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.