After losing two of his young daughters to a birth defect most have never heard of, a Utah Correctional Officer on a campaign to raise awareness for the defect brought his fight to the Riverton City Council on April 7.
Josh Hensley is the Utah Rep. for CHERUBS, an organization that raises awareness for Congenital Diaphragmatic Hernia, a birth defect where the diaphragm fails to form properly, leaving a hole so the stomach and intestines migrate through the opening into the chest cavity.
Half of the 1600 children born each year with CDH die, Hensley said.
After hearing from Hensley at the City Council meeting, Mayor Bill Applegarth issued a proclamation recognizing April 19 as a day of awareness for CDH.
“I felt very strongly that this was important to make the public more aware of the disease and the consequences of the disease,” said Applegarth. “It’s a very serious and tragic disease, but one that I wasn’t familiar with until he made me aware of it and did my research on it.”
Although CDH occurs at the same rate as both Spina Bifida and Cystic Fibrosis, it has less than half the funding through the National Institute of Health as those, and far less media coverage, Hensley said.
“We want people to know about it because the more people that know about it, the easier it is for us to get more funding, get more research,” said Hensley. “We know absolutely nothing.”
Shortly after conceiving, Hensley and his wife, Melanie, discovered their first daughter had CDH.
“It’s a very lonely diagnosis, because nobody knows what it is,” Hensley said. “A lot of people have gone to the doctor and the doctor goes in the back, gets his medical journal and opens it up because he doesn’t know. Your doctor hasn’t heard about it, your family hasn’t heard about it—nobody knows what it is.”
Nor do they know what causes it or how severe the consequences will be when the baby is born.
“There’s no way you can tell how the lungs are going to function or how much damage there is to the lungs until the baby is born,” Hensley said.
When Allyson as born, the damage to her lungs was extensive; she was put on a machine to do the job her lungs and heart couldn’t, said Hensley.
“She wasn’t maintaining,” said Hensley, so the family made the difficult decision to take their first daughter off of life support only 14 hours after she was born.
The couple never imagined that their second child would also be born with CDH, but they continued going to a high-risk doctor to be safe. After doing an early ultrasound, the doctors realized that their second child had the defect as well.
When their second daughter, Evie, was born, doctors were able to repair the hole in her diaphragm. After several more surgeries, the little girl made it to her first birthday, which the family celebrated in the hospital. Shortly after returning from the hospital for her first birthday, Evie’s condition deteriorated.
“They don’t know exactly what happened,” Hensley said. “She went about 20 minutes without oxygen. There was no brain activity, and chances were she would never get better.”
The family decided to take their second child off of life support.
Soon afterward, the family got involved with CHERUBS, and Hensley became the representative for the organization to help raise awareness, funds, and assistance for families dealing with the birth defect. Hensley spends much of his time raising awareness at events like Riverton’s City Council meeting or lobbying on Capitol Hill for more funding.
“My personal end goal and the reason that I do this is because if I can help anybody through their experience, it was worth it,” said Hensley. “Ultimately my goal is so nobody else has to bury their kid. Because it’s just terrible. It’s not anything anyone should have to do. I made it, but nobody else should have to experience what I experienced.”