By Kathy Ostrowski, legislative director Kansans for Life
“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.
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.”
The following is the story of 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 out 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.
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.”