LAS VEGAS, Nev. (FOX5) – A Las Vegas mother says a misdiagnosis cost her one-and-a-half-year-old son his life.
One pediatric patient advocate says, without a comprehensive children’s health system in Southern Nevada, similar stories are far too common.
It was the week of July 4 when Maya Beaudette says she took her wheezing son, Preston Jovi, to the emergency room.
She says he was diagnosed with croup, but her instinct told her it was something more serious.
“I don’t think it’s croup, the whole time he was there he didn’t cough, not once,” she says.
She says Preston was discharged. When his symptoms got worse, she says she spent the next few days taking him to his primary care doctor, and then eventually back to the emergency room.
She says all of them, even a pulmonologist, confirmed the ER’s original diagnosis.
“I thought, so far three doctors and a specialist have been telling me it’s a croup, maybe I’m wrong,” she says. “We left the hospital at 6 p.m. after being discharged, my son died eight hours later.”
According to a Clark County Autopsy report, Preston died from Acute Bacterial Tracheitis, which is a bacterial infection in his trachea.
“I live with that guilt for the rest of my life, why did I believe them?” Beaudette says.
At her lowest moment, when she needed support the most, she says she was handed a pamphlet with a handful of resources.
“It was the most difficult time of my life, I did not have the support, and while I’m grieving the loss of my son, I had to make sure my other kids are okay,” she says.
To prevent other parents from feeling as helpless as she did, Beaudette started the Preston Jovi Foundation.
Among other things, the foundation connects grieving families to mental health resources, offers financial grants toward burials and memorials, helps with funeral arrangements, and even provides meals to families.
She says pouring herself into helping others has kept her alive through the most challenging months of her life. She hopes Preston’s memory can live on through every family touched by the foundation.
“He deserved to live and he deserves to be remembered,” she says.
Losing a child is a pain no parent should have to experience, but it’s a pain pediatric patient advocate, Rebeka Acosta, says far too many have.
“I hear a lot of stories where there’s a misdiagnosis, no diagnosis, or turned away,” Acosta says. “Without a comprehensive children’s health system here, this happens a lot”
Nevada’s first free-standing children’s hospital is expected to be completed by 2030. Until then, Acosta says its important parents give themselves grace.
“Families are left to be the caregivers and coordinators of all these things, and these are real jobs that people go to school to learn to do,” she says. “That is a monumental mountain that we’re asking families to climb.”
Acosta says it’s critical parents build a relationship with their primary care doctor.
If something feels off, she says parents can ask a doctor how they came up with a certain diagnosis, or ask the doctor to “show them the science.”
“You get education as a parent or a caregiver from the provider, and they’re also being educated. They are learning that this family is going to ask these questions, and they will start, overtime, providing the information before you ask,” Acosta says.
She suggests keeping the conversation going however possible, but worst case scenario, don’t be afraid to go to a different hospital.
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