‘Mr. 1 Percent’ Celebrates His Fifth Birthday

October 11, 2016 7:00 AM

When families of sick children face financial hardship during long hospital stays, a Mott fund makes “a world of difference.” One mom shares her story.

Owen, a pediatric heart transplant survivor, and his dog in the back of a truck

They call him “Mr. 1 Percent.”

That’s because Owen Pointer has continued to beat the odds after he was born with a complex heart condition that affects 1 percent of the population.

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Odds of survival, the doctors told his parents, were slim. Surgery was risky. Given the poor statistics, the family was offered hospice care instead of surgery.

They chose surgery — one that only two centers in the country were commonly performing at the time.

And this week, with his twin brother, Keegan, Owen celebrates his fifth birthday.

“We’ve gotten used to hearing: ‘There’s a 1 percent chance of this happening,’” his mother, Erin McRae, says. “Somehow, Owen was always in that 1 percent.”

“But nothing could stop him. He is happy, healthy and headstrong — which he probably needs to be to survive all he went through.”

Still, Owen’s journey wasn’t easy.

He endured five open-heart surgeries before his first birthday — including a heart transplant at 11 months old. There were battles with other rare complications along the way, too, including a gastrointestinal condition called pyloric stenosis that required surgery to open up the outlet from his stomach to let food pass through.

The extensive care kept the family from their home in Manistee for months at a time. That’s why they credit a special program known as Save A Heart for easing some of their monetary and logistical concerns in a time of crisis.

On Oct. 15, just two days before Owen’s birthday, Erin will share her story at the Save A Heart fundraiser hosted by the University of Michigan C.S. Mott Children’s Hospital, where Owen received all of his treatment.

For 24 years, Save A Heart has helped families like Owen’s cover expenses that include gas, food, lodging and other necessities during extended hospital stays.

Such support was critical to Owen’s family as he spent more than 100 nights at the hospital in his first year of life.

Owen and his mom in the hospital before his open heart surgery
Erin McRae with her son Owen in the hospital.

Help during hard times

When Erin gave birth to her twin boys at a hospital in Traverse City in 2011, doctors immediately knew something was wrong with Owen’s heart. He was whisked away, placed on a ventilator and flown   to Mott via U-M Survival Flight.

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“They wheeled him right out of the room,” Erin recalls. “He was having a heart ultrasound while I was getting stitched back up in recovery from the C-section.”

Keegan, meanwhile, had amniotic fluid in his lungs, so Erin stayed back with him. Four days later, she was finally able to get to Mott and touch Owen for the first time.

Owen was diagnosed with several complex congenital heart conditions, including endocardial fibroelastosis (EFE), a thick layer of scar tissue lining the heart caused by a narrowed aortic valve. The condition impairs heart function and can lead to congestive heart failure and lung damage.

At the time, only two surgeons in the country were experienced in performing the type of heart surgery Owen needed, called a Ross-Konno procedure to replace his aortic valve, and an EFE resection. One of them was Richard G. Ohye, M.D., the head of pediatric cardiovascular surgery at Mott.

Erin, husband Matt and Owen’s brothers, Logan (now 12) and Zander (now 8), moved into the Ronald McDonald House in Ann Arbor for what turned out to be a nearly yearlong stay.

Save A Heart helped with travel costs between Mott and the family’s home, located four and a half hours away. It also supplied gift cards to purchase Christmas presents for their kids.

Easing financial burdens was key in helping the family stay together amid uncertainty.

“Because Owen was so fragile and we didn’t know what would happen, we decided not to separate our family,” Erin says. “We didn’t want the other boys to miss out on knowing their brother if this was the only time we were going to get with him.”

“Every time we needed help, Save A Heart was there,” she adds. “We were so thankful knowing there was a program that would always be there for us to eliminate at least some of those stresses. It made a world of difference.”

Blessings and thanks

Owen and Keegan will soon mark age 5 with a dinosaur-themed birthday party surrounded by family and friends.

“There’s not a day that goes by when we are not grateful for having this time with Owen,” Erin says. “We’re about to celebrate five years. We weren’t even expecting five days.”

That isn’t the only big milestone: It’s also Owen’s four-year heart transplant anniversary.

The family knows that one day — probably in 12 to 15 years — he will need another new heart.

Nonetheless, Erin says, “our hope is that he holds true to his nickname, ‘Mr. 1 Percent,’ and doesn’t need one for many, many more years after that.”