Less than five days after he was born, Ethan James Wayne died at the Brandon hospital. Eight hours later, he was diagnosed with medium-chain acyl-CoA dehydrogenase deficiency, which prevented his body from turning certain fats into energy. (SUBMITTED)
Ethan James Wayne with his sister Lori, who also possesses the recessive gene that took the newborn's life. (SUBMITTED)
Parents Becky and Trevor Wayne have started a charity to raise money and awareness about medium-chain acyl-CoA dehydrogenase deficiency, and are holding a fundraising event on Sept. 25 at Houstons Country Roadhouse. (SUBMITTED)
In less than five days, Trevor and Becky Wyne went from one of the highest points in their lives, celebrating the birth of their son Ethan, to one of their lowest, when he died due to a rare undiagnosed disorder.
Ethan James Wyne died Sept. 12, 2013.
Eight hours later he was diagnosed with medium-chain acyl-CoA dehydrogenase (MCAD) deficiency.
The rare disorder prevented the infant from converting certain fats into energy, causing his organs to shut down.
"I still can’t put it into words and even to this day it’s shocking to me that it actually happened," Becky said, her eyes filling with tears, with Trevor right beside her for support.
"You have children and you know that this can happen, but you never expect it to happen to you. The days after Ethan passed away was like walking in a daze. I don’t remember a lot of what happened."
It all started five days earlier, when on Sept. 8, 2013, Becky gave birth to a baby boy. Weighing eight pounds, nine ounces, Ethan had chubby cheeks and was deemed happy and healthy from health professionals.
Almost immediately, the Brandon couple noted how much their newborn slept. Unlike their first child, Lexi, who was at times a handful, Ethan seemed content to sleep hours on end throughout the day.
On Sept. 11, a postpartum nurse’s checkup revealed low blood-sugar levels and a lower than normal heart rate. While it was concerning, it’s not out of the ordinary and the nurse made an appointment to check back in within the week.
That night, however, at approximately midnight, Ethan refused to breastfeed and the couple decided to try to bottle feed him. It was then that the just days-old baby went pale and became unresponsive.
The couple phoned 9-1-1 and an ambulance arrived to treat the boy. Less than one in a half hours later, Ethan died at the hospital.
"It happened really fast," Becky said.
Complicating matters was the fact that Ethan was still having regular bowel movements, which didn’t trigger any alarm bells about digestive problems.
"Now, that we know about MCAD deficiency I know that there were signs, but it’s so rare that no one knew about it or what to look for."
The couple has now made it their mission to make sure the tragedy never happens to another family.
They’ve set up an educational group, the Ethan James Wyne MCADD Organization, which was recently granted charitable status.
The designation means they can now raise money to continue to bring awareness about the disorder, which is inherited through a recessive gene that both parents must carry.
They’ve also learned eight-year-old Lexi possesses the recessive gene.
"We want to prevent what happened to Ethan from happening to another child," Becky said. "It’s the worst thing we’ve ever had to go through."
The group will host its first fundraiser night on Sept. 25 at Houstons Country Roadhouse, with tickets available through their website, ejwmcadd.org
"He was an amazing baby," Becky said. "We’re happy for our four days with him and it’s too bad we didn’t get to spend more time with him, but the four days we had were great."
» Twitter: @CharlesTweed
Republished from the Brandon Sun print edition August 1, 2014