Monroe Co. parents proposing 'Bobby's Law' in honor of son taken off life support

Measure would require a minor’s parents to consent to withhold or withdraw life-sustaining treatment or to give do-not-resuscitate orders.

By Kaitlin Durbin / The Blade
Mon, 02 Dec 2019 16:25:21 GMT

Editor’s note: This story was updated to include comment from Michigan Medicine, formerly the University of Michigan Health System.

FLAT ROCK, Mich. — After their 14-year-old son was pulled off life support despite their objections, Sarah Jones and Jose Reyes are fighting to enact new legislation in Michigan that they think could have saved his life.

So-called “Bobby’s Law,” named after their son, Bobby Reyes, would require a minor’s parents to consent to withhold or withdraw life-sustaining treatment or to give do-not-resuscitate orders before medical professional could end life support for a juvenile. It also would allow parents or a legal guardian to defer for an unspecified period the apnea test required to determine brain death.

Ms. Jones, an Ash Township resident, believes the law would have given their son time to heal properly before being declared brain dead and taken off life support. He was pronounced dead on Oct. 15 at University of Michigan’s C.S. Mott Children’s Hospital in Ann Arbor, after spending 23 days in a coma.

“I’m hoping it helps the next kid with the chance to wake up because our son didn’t get that,” Ms. Jones said. “I’m not done fighting for him. ... Everything was wrong and we’re going to fix it.”

Sponsoring the bill is Michigan Representative Joseph Bellino (R., Monroe), who met with the parents Monday at a Biggby Coffee shop to discuss the measure, which is currently being drafted and is expected to be formally introduced in the spring.

“Hopefully this won’t be a political issue when it gets to the floor,” Mr. Bellino said. “Drafted correctly, how can you be against it?”

They plan to model the bill after Arizona’s “Simon’s law,” HB 2122, which requires parental notification before a do-not-resuscitate order is placed on a minor’s medical chart and includes a parent or legal guardian’s right to transfer the child to another facility if they disagree with the implementation of the order. Versions of the bill also exist in South Dakota, Kansas and Missouri, where it originated following the death of 3-month-old Simon Crosier in 2010.

Ms. Jones wants to bring the legislation to Michigan under the name “Bobby’s Law,” and add language to require doctors to postpone the testing she said the hospital used as justification to remove him from support.

“There should be something to protect us so the next mother can say ‘Bobby’s Law, I have rights,’” she said. “We should have the right to disagree with the doctors.”

The Reyes youth’s death gained national attention after medical officials at Mott Children’s Hospital recommended taking him off life support despite the parents’ protests and attempts at legal intervention.

Bobby Reyes was brought to the hospital on Sept. 22 after suffering an asthma attack and subsequent cardiac arrest. Two days later, he received his first brain-death evaluation, which the hospital said showed no detectable brain or brain-stem activity. Additional ancillary tests also showed no electrical activity or blood flow in the boy’s brain.

The hospital declared him brain dead on Sept. 26 and planned to discontinue his life support the next day, saying it would be “inappropriate” to continue “medical interventions.”

Michigan law states that a person is dead when they have sustained irreversible cessation of all brain function, including the brain stem. It’s also against the hospital’s ethical policies to provide treatment it deems of no value to the patient but for the benefit of a third party like the family.

Bobby’s family got a restraining order to temporarily delay actions while they worked to find another facility where they could transfer him, but all attempts fell through.

They also sought an injunction based on the opinions of other doctors who reviewed Bobby’s medical records and said there were indications his brain was still functioning at some level, but the case was ultimately dismissed when the judge said he lacked jurisdiction. The family’s attorney was filing an emergency appeal when the hospital removed Bobby’s ventilator.

Hospital system officials argued they did everything they could to help the Reyes youth, including contacting 20 facilities while searching for a transfer agreement. Every facility contacted declined the request. They said they empathized with the family, but it was inappropriate to continue life support given his condition.

“Our health care team at Michigan Medicine continues to extend our deepest condolences to the family of Bobby Reyes in this heartbreaking situation,” Mary Masson, Michigan Medicine spokesman, said.

The family’s attorney at the time said he never claimed U-M was acting negligently. Rather the matter amounted to a difference of opinion and conflicting science. The hospital had the legal authority to take the action it did, he said, and was following its own policies.

Still that provided little solace for Ms. Jones.

“The University of Michigan just killed my son,” she wrote at the time on the “Save Bobby” Facebook group, calling the university “monsters and murderers.”

She believes doctors rushed to perform the test that would allow them to legally declare him dead and discontinue life support.

The family of another comatose teen from Lathrup Village, north of Detroit, is going through the same fight as the Reyes youth’s family. Beaumont Hospital in Royal Oak recommended taking 16-year-old Titus Cromer, Jr., off life support after he was declared brain dead on Oct. 24, following a head injury days earlier.

His family disputed the finding, obtained an emergency temporary restraining order to prevent doctors from removing his life support. They have taken the case to federal court. Parties met Monday for a settlement conference but could not reach a settlement, U.S. District Court of Eastern Michigan spokesman David Ashenfelter said.

Mr. Cromer’s medical interventions will continue through Wednesday, when settlement discussions will reconvene.

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