A doctor can place a do-not-resuscitate order on a minor’s chart without parental notification or consent. It’s a lesson Sheryl Crosier learned the hard way. Crosier lost her son, Simon, after doctors placed a DNR in the infant’s medical record.

Sheryl and her husband Scott learned during an ultrasound that Simon had a cleft lip and other markers for genetic disorders. Three days after Simon was born, they learned of his official diagnosis–Trisomy 18.

“At that point, I noticed things were changing,” Sheryl says in a video. “Before it was all the medical terminology and they’re doing everything for him. After that, it was different, we started hearing the words, ‘your child is now incompatible with life.’”

Sheryl advocates for Simon’s Law, legislation that would require the written notification of at least one parent before a DNR order is put in a minor’s medical chart. It also allows parents to change their minds or stop a DNR once implemented. It would also require hospitals to tell patients their futility policies, or their policies for treating people deemed incurable.

The hospital where Simon was treated had a policy allowing any physician to determine the outcome of a disabled child.

“We would have never stayed there had we known they had a futility policy,” she says.

Throughout Simon’s stay in a neonatal intensive care unit, she had to fight with medical staff who shut off his heart monitors, refused to give him breathing treatments, and she had to beg to give Simon breast milk.

Nurses used a syringe to put drops in Simon’s mouth, and Sheryl asked what it was. Staff told her they were giving him sugar water when he got fussy.

“Wait a minute,” Sheryl says. “I’m pumping breast milk. What if we used my breast milk?” She asked medical staff. Eventually she got approval to give him breast milk. After Simon died, she learned why they were reluctant to grant her that request.

“When I looked through Simon’s records, not only did I find the DNR, I found comfort feeds,” she says.

Comfort food isn’t intended for nourishment.

“It means they starve you to death,” Sheryl says. “If Simon wouldn’t have stopped breathing, he would have been starved to death.”

When Simon stopped breathing, Sheryl and her husband stood in the NICU watching Simon’s numbers plummet and asking what can could be done.

“We were told nothing,” she says. “And then looking back knowing what I know now, I know why they did nothing. He had a DNR in his chart. We never put or signed a DNR…If this was any other child, it would have been an ER moment with people running down the NICU halls to save my child.”

House Hearing

The Federal and State Affairs Committee will hear testimony on Simon’s law on March 21. It successfully passed the full Senate with an overwhelming majority. Only nine Senators–Sens. Barbara Bollier, David Haley, Randall Hardy, Anthony Hensley, Tom Holland, Laura Kelly, Pat Pettey, Lynn Rogers, and Dinah Sykes–voted against the measure.

Despite the ease of its passage in the Kansas Senate, similar legislation stalled in Missouri last year. Five Missouri hospitals opposed the legislation there.

In Kansas, no hospitals testified against the proposal. However during Senate debate Bollier, who voted against the law, offered amendments to the bill on behalf of Children’s Mercy Hospital.

Dr. Laura Miller-Smith, chair of the Ethics Committee at Children’s Mercy in Kansas City, said her organization is neutral on the Kansas legislation.

“Children’s Mercy is very supportive of a bill that supports shared and informed decision-making with families, especially when it comes to end-of-life discussions,” she said in a statement. “Children’s Mercy does not have a futility policy. We do have a policy that requires mediation between physicians and families when they cannot agree upon an end-of-life care plan. This policy does not allow physicians to unilaterally withdraw life support.”