When Seth Turner showed up to his surprise birthday party Friday afternoon, the newly turned 13-year-old played it cool.
Surprised by more than 50 family members, friends and hospital staff in Ochsner Medical Center’s indoor Visitors Garden, he paused just long enough to take it all in and strike a few goofy poses for photographers before running off to give his 6-year-old cousin Naiya a hug.
While Turner’s wish this year is for some Legos, his mom, Pam Kessler, said her biggest wish for him was granted a few months ago — on June 17.
That is the day when, after three years on the waiting list, Seth finally received a heart transplant at Ochsner Health Center for Children.
A native of Clinton in East Feliciana Parish, the boy was born with a rare heart defect called hypoplastic left heart syndrome. Essentially, the left side of his heart was critically underdeveloped. It’s a condition that is typically fatal within the first year of life.
Seth survived to see his first few birthdays with the help of three open-heart surgeries before the age of 3. But by the time he turned 9, it was time to start looking at something even more invasive.
Leaving their rural home behind in June 2011, his family relocated to the only facility in Louisiana that offers a pediatric heart transplant program, Ochsner Medical Center in New Orleans.
“Seth’s condition is uncommon — only affecting about two or three of every 10,000 children — but for us, it’s common. We see a number of patients with his syndrome,” said Dr. Thomas Young, a pediatric cardiologist and head of the Pediatric Heart Transplant Program at Ochsner.
What Young said he doesn’t see often is a kid with such a zest for life.
“Seth is a nut. He’s extremely active and extremely outgoing, and he can definitely be a troublemaker,” Young said with a laugh. “I mean, the kid actually managed to break his arm riding a four-wheeler while hooked up to a continuous IV. How do you do that?”
Hoping to stave off a transplant for as long as possible, when Young began seeing Seth at the age of 9, he placed him on continuous intravenous therapy to keep his heart beating.
“All kids with this condition will eventually need a heart transplant, but the goal is to put it off as long as possible to give them the best chance at a positive outcome,” said Megan Owens, an assistant to Young.
The decision was finally made for Seth to go on the donor waiting list three years ago, but a series of factors made finding a suitable heart for him especially challenging.
For one thing, he was very small for his age, weighing only about 40 pounds. That meant a donor heart had to come from someone no more than twice his weight, or 80 pounds.
Another challenge is that he is blood type O. While they can be universal donors to others, people with this type of blood are able to accept organs only from another O donor.
In addition, after multiple transfusions and procedures, Seth had developed antibodies to other people.
“It’s fairly common, but it’s something that rules out more donors,” Young said.
Over the years, two hearts were eventually found, but both times the boy was too sick for the procedure.
His mother said that after three years, she finally faced her biggest fear.
“It had gotten to the point that it looked like it was possible the transplant wasn’t going to happen,” Kessler said. “That was my scariest moment.”
But then, one day, the call came. A donor had been found, and Seth was well enough to do the procedure. The operation was done the same day.
Less than three months later, while the mischievous new teenager was telling “knock-knock” jokes and posing with Captain America at Ochsner’s surprise party, his mother talked about how life has finally been allowed to continue for the family.
“I actually got married this past weekend. We had put it off and put it off because we were waiting for Seth to be OK,” she said, noting that her son proudly served as her ring bearer.
“There’s a light now,” she said. “I feel like we can finally move forward.”