Thread: Boy embracing life 9 years after historic surgery

NEWS: Front Page
N-J/David Tucker
Brendon Ednie shows off his scars and a medication port, which, combined with his 12 daily medications, are constant reminders of his historic surgery.


Surgery timeline

Brendon Ednie was the first child in the world, and second person to undergo a simultaneous heart, double lung and liver transplant. He is among three of eight people who underwent the same surgery and are still alive, according to the United Network for Organ Sharing.

Here are some significant dates in his young life.

· Born on Oct. 16, 1995.

· First surgery to correct twisted bowel at 22 hours old.

· Came home for first time when 3 months old. Health continued to deteriorate.

· Went to Children's Hospital of Pittsburgh for evaluation in October 1997. Told he had about a year to live.

· Day after Thanksgiving 1997, family received a call from the hospital that matching organs were available, but couldn't arrange an airplane flight in time.

· Midnight on Aug. 21, 1998, received another call that organs were available. A 10-month-old baby had choked to death. Caught airplane flight from Daytona Beach around dawn and arrived in Pittsburgh later that morning. Surgery started about 10:30 a.m. and concluded the next morning about 6:30.

· Back home March 17, 1999, St. Patrick's Day.

August 20, 2007

Boy embracing life 9 years after historic surgery

'Every day is just another blessing' for parents
By RAY WEISS
Staff Writer

SOUTH DAYTONA -- The little boy with the big grin approached with laser speed, spinning plastic super heroes in each hand.

"The Fantastic Four are my favorites. I really like the Human Torch and Invisible Woman," he said, adding his best sound effects as the attack proceeded. "They're my favorites. They fight bad guys."

In his own way, 11-year-old Brendon Ednie is a superhero, an invincible fighter even at 46 pounds and 3 1/2 feet tall.

Nine years ago Tuesday, he became the first child in the world to receive a combined heart, double lung and liver transplant during 20 hours of surgery at Children's Hospital of Pittsburgh.

"There was no time given for how long he'd live. They didn't know. It was a new thing," said Bryon Ednie, a 40-year-old guard at Tomoka Correctional Institution, as he looked at his energetic little son sprint around the living room. "We didn't expect to have him this long. Every day is just another blessing."

Brendon was born with Alagilles Syndrome, a rare genetic disorder that is characterized by a defective liver, as well as heart, kidney and eye problems. He had no pulmonary artery -- the blood vessel that connects the heart to the lungs.

It turned out that two of his father's sisters had the same condition, although it went undiagnosed. Ednie's youngest sister died when she was 18 months old, while the other received a transplanted liver in the early 1980s. She's 35 now.

Brendon makes up for his diminutive size with a super-charged personality. He's engaging, inquisitive and self-confident, firing off continuous questions to anyone within his range.

"Why are you here?" he greeted a stranger who asked how he was feeling. "I'm doing good. I'm good."

His 14-year-old sister, Rachell, sat quietly in a nearby chair, annoyed with her younger sibling as he headed over to a shelf and picked out a favorite movie, "Ghost Rider."

"I've got 45 movies," he said after a quick count.

Brendon is simply her brother, no one special, and she cuts him no breaks.

"He gets all the attention," she lamented.

Brendon's headed back to school today , a fourth grade, special-education class. He's still catching up on lost time, having learned to read last year.

His favorite subject?

"Lunch," he said with a precocious smile. "And art. I like to paint."

In his free time, Brendon plays outside with neighborhood kids and takes a martial arts class twice a week.

"When school starts, computer time goes down," Brendon's mother, Rebecca, told her son, a computer-game junkie. "There's homework to do."

Brendon listened as his parents openly discussed his medical past.

"It's boring," he said, uninterested in recalling the darker days.

He prefers to embrace life. Others can tell the stories.

"The first word I ever heard him say was 'popcorn,' " said longtime friend Becky Riley with a grin. "Every year I give him a big tin of popcorn for Christmas."

Brendon visits Shands Hospital in Gainesville on average several times a month for checkups and tests.

Barbara Williams, the hospital's heart and lung transplant coordinator, has come to know Brendon very well over the years.

"The will this kid has to live has been extraordinary since Day One," she said.

Williams said the surgery is rare for several reasons. Most children as ill as Brendon was don't survive long enough to find such a young donor who died with all organs intact.

"Brendon has done very well. The lungs are the most difficult to maintain. The dominant organ," she said. "But he has had very little infection or rejection. And none with the heart or liver."

But she said there is no way to predict how long he might live.

"He just did a 6-minute walk here with no shortness of breath," Williams said. "He's an amazing little boy."

Most of Brendon's medical bills and 12 daily medications are covered by Social Security/Medicaid. Donations made to a continuing account held by Grace Episcopal Church in Port Orange help cover travel costs for gas and repairs on the couple's old cars, which need to be replaced. Money contributed by the community also paid for a washer, dryer and stove.

The family is planning a small celebration at home Tuesday for their son with ice cream and cake. A larger party is planned for next year, honoring the 10th anniversary of Brendon's historic surgery.

"I'm rich. I have another year. He's my miracle baby," Rebecca Ednie said, as her suddenly quiet son snuggled by her side. "We still go to bed each night and wonder if his heart or lungs will fail him. It's always there, not knowing what's going to happen. But we have to put it in God's hands."

ray.weiss@news-jrnl.com