Lakewood Boy, 2, Recovering After Third Open-Heart Surgery

Lakewood residents Carl and Whitney DeJohn just watched their son C.J. take his first steps – again.

“Now that he’s learning how to walk again, it’s like he’s a baby all over again,” Whitney said.

Two months ago, just after his second birthday, C.J. entered the operating room for his third and hopefully final open-heart surgery. He was born with hypoplastic left heart syndrome (HLHS), a rare disease in which blood is blocked from flowing into the left side of the heart, rendering it unable to grow and develop.

Whitney, 27, said during the procedure, C.J. suffered a stroke in the right side of his brain, leaving the left side of his body paralyzed.

“It took my husband and I a week to be able to say our son had a stroke during surgery,” Whitney said. “It was one of those ‘Oh that doesn’t happen to us, we only read about those people.’”

Birth and surgery all in a week

C.J. was diagnosed minutes after his birth in Colorado Springs, CO, and was flown by emergency medical helicopter to Denver before Carl and Whitney could hold him.

Five days later, C.J. underwent his first open-heart surgery.

“We had no idea when I was pregnant that anything was wrong,” she said. “It was a pretty big shock.”

After C.J.’s first two surgeries, Carl and Whitney decided the thin Colorado air would be too much of a strain on C.J.’s heart, and decided to move to Cleveland. Whitney quit her job as an assistant general manager at a downtown Colorado Springs restaurant, and Carl quit pursuing his master’s degree. They short-sold their house, moved in with relatives of Carl, and eventually moved to Lakewood.

“My family is from Colorado,” Whitney said. “I left everything and everybody.”

'Our million dollar baby'

The chances were slim – about one in every 10,000 babies are born with HLHS, and the chances of complications from the corrective surgery, known as the Fontan procedure, were less than 1 percent.

And because it’s such a rare complication, Whitney said the three procedures weren’t cheap. Each surgery was between $100,000 and $200,000.

 “Over three years, I would say (our total medical bills are) about $600,000,” she said. “He’s our million-dollar baby.”

Nicole Weiss, a friend of the DeJohns, decided enough was enough.

She and a group of friends started Celebrating CJ, a fundraising campaign on the website IndieGoGo.

Weiss said the group has raised $10,500, doubling their initial goal.

"We just wanted to give them a chance to pay a few medical bills or their deductible, or to be able to fly back to Colorado for the holidays," she said.

Benefit event this Sunday

The group is sponsoring a benefit at Paladar Latin Kitchen and Rum Bar in Woodmere on Sunday, Nov. 20 from 12:30-3:30 p.m. Entry is a $30 donation per person, and includes food, beer and wine. Several items, including a television, locally-made jewelry, spa packages and $600 worth of Ohio State memorabilia, will be raffled as well.

"We want it to be an upbeat celebration of how awesome C.J. is doing," Weiss said.

C.J. spends two days a week in physical and occupational therapy at Cleveland Clinic Children's Hospital, and, watching him bumble around like any two year old would, it's hard to think he was paralyzed just two months ago. Her son’s swift advances, along with those of the medical industry since his first surgery in 2009, give Whitney a little bit of hope through all the worry.

“When they do get to those milestones nobody thought they would reach, it makes it worth it,” she said.