JEFFERSON CITY — Sheryl Crosier watched as her son, Simon, took his last breath without any effort from hospital staff to resuscitate him.
It was only after Simon died that Crosier and her husband found out doctors in Missouri can place do-not-resuscitate orders on child patients without permission from their parents.
Simon was diagnosed with Trisomy 18, a life-threatening developmental disorder, when he was born in 2010. Three months later, Crosier said doctors at the St. John’s Mercy Medical Center, now Mercy Hospital St. Louis, placed a do-not-resuscitate order on Simon’s medical chart without her or her husband’s permission.
“His oxygen level was falling, and we were told this is the end and nothing could be done. And we were just watching our child die,” Crosier said. “The only people that were panicking in his NICU room were (my husband) and myself.”
Since then, Crosier said she has been working to make sure the same thing doesn’t happen to other parents.
A proposed bill in the state House of Representatives would stop medical officials from acting without parents’ knowledge. The bill, called Simon’s Law, was proposed by Rep. Bill Kidd, R-Jackson.
Five years ago, before he was elected, Kidd said he met Crosier at a dinner party where he heard her tell Simon’s story.
“After I heard her story, I told her, ‘If I am elected, I will fight the fight for Simon,’” Kidd said.
The bill, which has been proposed for the fifth year, would require medical personnel to get a parent’s permission before adding a DNR order to a child’s medical chart.
Kidd said earlier versions of the bill would have required parents to sign the DNR order. He said that requirement has been removed from the current version of the bill after parents, who have experienced similar situations as the Crosiers, advised him.
“It’s already an emotional situation, and then to have them sign the death warrant for their child is too emotional,” Kidd said.
The new version of the bill would require medical staff to meet with at least one parent and two witnesses to have a verbal agreement about what medical professionals should do if the child needs to be resuscitated.
During a Health and Mental Health Committee hearing Monday, Kidd said the bill would protect both parents and medical professionals.
“This is a parental rights bill,” said Kidd. “But we’ve put things in there to also protect the doctors and hospitals to say, ‘Doctor, you don’t have to do CPR forever and ever. You can stop.’”
Kidd said he has been working with the state’s hospital association to ensure that both parties are satisfied and feel protected.
Dave Dillon, vice president for media relations at the Missouri Hospital Association, said in the past that the association has been concerned that the bill would limit health care professionals’ medical judgment.
“Do you tell medical staff to perform CPR on an individual that is otherwise dead until you get the parent’s approval?” Dillon asked.
But after several edits to the bill, the association said it is satisfied with the current language of the bill and does “not actively support or oppose it.”
For children who are in the custody of the state, the bill would allow a juvenile court to make decisions about their end-of-life plans.
Although the bill has failed in the Missouri legislature for five years, it has made progress elsewhere. Simon’s Law has been proposed in several other states, with Kansas becoming the first to pass it into law in March 2017.
Crosier said passing the bill is about empowering parents.
“Nobody should make these decisions except for a parent,” Crosier said. “That’s why people need to know about these secret DNRs.”
Supervising editor is Mark Horvit.