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Tragedy shines light on disorder

Couple establishes educational group

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Ethan James Wyne died in 2013.

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Ethan James Wyne died in 2013.

BRANDON -- 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 because of a rare undiagnosed disorder.

Ethan James Wyne died Sept. 12, 2013.

It turns out Ethan suffered from 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," said Becky, her eyes filling with tears, 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, the couple gave birth to a baby boy. Weighing eight pounds, nine ounces, Ethan had chubby cheeks and was deemed happy and healthy by health professionals.

Almost immediately, the 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 through 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 the days-old baby went pale and became unresponsive.

The couple phoned 911 and an ambulance arrived to treat the boy. Less than 1 1/2 hours later, Ethan died at the hospital.

"It happened really fast," Becky said.

Complicating matters was the fact 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 both parents must carry.

They've also learned Lexi, 8, 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 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."

 

-- Brandon Sun

Republished from the Winnipeg Free Press print edition August 1, 2014 A10

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