Alex and Janet Blouin by the lake on the campus of Ellisville State School.

In the days before Alex Blouin died, his mom, Janet, could see he wasn’t well. His skin was sallow, and Janet wondered if his thick brown hair was thinning. His blue eyes, normally so vibrant, seemed dull and tired.

On a walk at Ellisville State School that weekend, the energetic 20-year-old surprised Janet and his dad, Scott, by asking to turn back. At age 11, Alex had moved to Ellisville, a state facility for people with intellectual and developmental disabilities, after a childhood brain tumor left him with cognitive delays. Even though he rarely spoke, Alex’s parents said he loved to get out, to play games and to walk. But that day he told them he was too tired. They went back to his dorm.

“It was just a feeling. Something was different in his eyes; they weren’t as bright. He seemed sad, and he seemed tired,” Janet said.

But she didn’t think her son was at risk of dying. And, she said, if the right systems had been in place, she’s not sure he would have.

As a result of his death, Chris Johnson, R-Hattiesburg, introduced five pieces of legislation to the Mississippi House of Representatives, each bearing Alex’s name. Janet and Scott Blouin wrote the bills to ensure more people and places around the state are ready to respond to crises.

“They’re good, religious people that lived through a terrible situation with their son, and they want to prevent the same thing from happening to other people,” Johnson said. “You can’t help but want to help people like that.”

Andrew, Scott, Janet and Alex Blouin at home.

Alex died on Tuesday, March 26, 2013. Janet was preparing dinner at home in Hattiesburg when a nurse from Ellisville called to say Alex had collapsed. She and Alex’s older brother Andrew rushed to meet his ambulance at Laurel’s South Central Regional Medical Center. Half an hour after they arrived, a doctor told Janet and Andrew that her younger son had died.

“Everything happened so fast,” Janet said.

In fact, Alex’s death happened slowly, with an illness that progressed over months, aided by a misdiagnosis and a series of errors the Blouins say collided once he collapsed.

The Blouins are suing Ellisville State School over some of these errors. A representative from Ellisville declined to comment for this article, citing the Blouins’ pending lawsuit. But Janet and Scott Blouin are adamant that their legislation, at least, is not about assigning blame.

“We want good to come out of this. If these laws pass, then this is a major good to come from Alex’s life,” Janet said.

Still, when Janet and Scott speak about the day their son died, they hold onto the details as carefully as they describe what it felt like to hold Alex’s hand. It is clear that a part of each of them, at least, believes that Alex did not have to die.

“We had a doctor we know look at the records, and he said that if 911 would have been called in time, that if Alex had gotten to a hospital in a timely manner, he could have lived. No one can say for sure, of course, but there’s a chance he could have lived,” Janet said.

Instead, Alex’s parents say he lay on the floor of his dorm as minutes ticked by, bleeding internally from a ruptured intestinal tumor. Janet and Scott estimate that 20 minutes passed while staff worked to revive him. Finally, a cook in the cafeteria asked if anyone had called 911 and used her own cell phone to dial an ambulance.

As a result, the Janet and Scott drafted what became House Bill 382, the Alexander Blouin Mississippi 911 Reporting Act. It would require any Mississippian in a workplace to first dial 911 in an emergency. Ellisville already has this policy in place. But Janet Blouin said her hope is that a law would help reinforce policies like the one at Ellisville.

Rep Chris Johnson, R-Hattiesburg

“What (the Blouins) felt like is that there was a lack of protocol. Everybody expected somebody else to take care of it,” Johnson said. “… So if this can bring forward any positive actions, of course I’m in favor of that.” The bills have not yet been taken up by legislative committees.

As a state-run medical facility, Ellisville State School is equipped with crash carts, which staff is trained to use until an ambulance arrives. But the nearest crash cart was in the building next door. And when employees finally found it, they discovered it wasn’t properly stocked. “It was pretty much useless,” Janet said.

House Bill 400, the Alexander Blouin Mississippi Crash Cart Requirement Act, would require all Mississippi high schools, colleges, federal and state buildings to have fully stocked and operational crash carts available in designated areas throughout the facility.

Janet said staff also performed CPR on Alex, and while she doesn’t doubt that state employees are well trained in this area, she said everyone in the state should have this level of training. House Bill 345, the Alexander Blouin Mississippi High-School Graduation Requirement First Aid Act would require Red Cross first aid certification for all high school graduates in the state. 

Alex and Scott Blouin during a hike in Sumrall

The one thing Scott and Janet Blouin feel certain would have prevented Alex’s death is a correct diagnosis. For months, they said he experienced intestinal symptoms, including bleeding. A doctor at Ellisville was alarmed enough to refer Alex to a gastroenterologist at University of Mississippi Medical Center.

Because Alex’s brain tumor had left him unable to express complex ideas or describe his symptoms, an Ellisville staffer accompanied Alex to his appointment. But Janet said this staffer was unfamiliar with his medical history. The doctor never heard of Alex’s childhood brain tumor or that tumors were likely to recur. He diagnosed him with hemorrhoids.

Ultimately, Alex’s autopsy revealed an 11-centimeter tumor embedded in the wall of his intestines.

Although Alex’s medical file accompanied him to his appointment, Janet said that after a dozen years of consistent medical care, it was “a foot thick.”

“No one can read a full binder that thick. (The doctor) definitely could have done a lot better, but he made his evaluation based on the incorrect and incomplete information that was given to him,” Janet said.

House Bill 388, the Alexander Blouin Mississippi Medical Referral Act, would require doctors to personally fill out a short medical referral form for each patient they refer to a specialist. This form would include relevant medical history, presenting symptoms, current medication and allergies.

The final bill, the Alexander Blouin Mississippi Hospital Organ Donation Notification Act, addresses an oversight Janet said occurred after Alex died.

Alex was not an organ donor, but Janet said he would have been if someone at the hospital had given her the option after his death. House Bill 381 requires the attending physician to make any next-of-kin present at the hospital aware of organ donation possibilities.

Janet said she knows that because Alex was autopsied, few of his organs would have been available to donate. But she imagines that, if she’d had the option, she would have donated his eyes.

Alex Blouin, age 17

“Alex had the most beautiful blue eyes. And he had perfect vision, and they were just beautiful, and that would have been able to help someone,” Janet said.

For Janet and Scott, the spirit behind this bill is the spirit behind all the legislation: They want as much good to come from Alex’s death as it did from his life.

Scott said that even now, people still stop him to talk about Alex. His parents estimate nearly a thousand people showed up to his funeral.

“Because of the way Alex was, he made you feel like you were the most special person in the world when you were with him. He would actually hug you and say your name and want to play – in my world, you very rarely meet people like Alex,” Scott said.

In the wake of Alex’s death, Janet started a foundation, Love Lives, which takes its name from a verse in 1 Corinthians, “and now these three remain: faith, hope and love. But the greatest of these is love.” She said the purpose of it is to encourage people who have lost a young loved one to give something that “shows that your love still exists.”

“I do hope that these bills will be passed. And I hope that this major purpose that I had in mind for Alex, that other people will be prevented from this kind of devastation, (will be realized). That out of something tragic, something good will happen and that good will continue to affect people for some time,” Janet said.

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Larrison Campbell is a Greenville native who reports on politics with an emphasis on public health. She received a bachelor’s from Wesleyan University and a master’s from Columbia University's Graduate School of Journalism.Larrison is a 2018 National Press Foundation fellow in public health, a 2019 Blue Cross Blue Shield Foundation of Massachusetts fellow in health care reporting and a 2019 Center for Health Journalism National Fellow.