In 2012, while 3-year-old Riley O’Brien was on the waiting list for a heart/lung transplant, a Courier-Post videographer spent a day documenting his experiences. Courier-Post
Despite a round of invasive tests impending this week, the nine medications he takes daily, and the worries of contracting a life-threatening infection, Riley had a more pressing aggravation during a recent visit.
A pile of homework for a possible snow day.
The second-grader groaned about the task, appearing like any other kid beleaguered by the demands of school. Then he set to work mugging for a photojournalist’s camera, twisting his grin sideways and swinging his arms as if to run.
“I’m Flash,” he explained, before rearranging his pose.
In truth, his mother said, he’s a miracle child.
Riley was born with heterotaxy syndrome, a rare birth defect affecting the heart and other organs. Before his birth, Carol O’Brien was told her little boy had a 50 percent chance of surviving to see his fifth birthday, according to a blog she’s kept since midway through her pregnancy. At nine months old, he had abdominal surgery and a feeding tube inserted. At 19 months old, he needed supplemental oxygen around the clock, and was put on the transplant waiting list for a new heart and lungs.
By the time his family was called with the news that donor organs had been found, Riley had undergone 26 heart catheterizations to open the scarred blood vessels leading to his lungs. His fingers were consistently blue because he couldn’t get enough oxygen into his blood.
On March 6, 2013, about a month before Riley turned 4, doctors at Children’s Hospital of Philadelphia replaced Riley’s failing heart and lungs with a new set. There were just 23 similar operations that year in the United States, according to the U.S. Organ Transplant and Procurement Network, but pediatric cases are even more rare.
Since 2013, there have been only five heart-lung transplants in children under age 10. CHOP boasts one of the largest heart-lung transplant programs in the world, and has handled more than 25 such operations among children and young adults since its inception.
The survival curve is not great for children with heart-lung transplants, explained Karen McCandless, a nurse-practitioner in CHOP’s heart transplant unit. But some patients have survived for more than 15 years.
“We really don’t know right now where Riley’s course will go,” McCandless said. “He’s doing great right now. He looks amazing.”
When a patient undergoes an organ transplant, McCandless said, “you’re trading one disease for another.”
Riley’s immune system is suppressed to keep his body from rejecting the donor organs. The possibility of infection, long-term side effects and an increased risk of cancer from medication will always be a concern. But he’s come a long way, said McCandless, who has followed Riley’s care since he was a baby. She marveled at his ability to attend school and live from day to day with few restrictions on activity.
That’s the goal, McCandless explained — to enable kids to live as normally as possible, for as long as possible.
“Just to watch all of the changes he’s gone through and see him explode with speech and just being able to do so many different things — it’s quite remarkable,” McCandless said. “We hope he’ll continue to stay this healthy for many more years.”
His medical issues meant he wasn’t able to eat by mouth for years. This year, he eats his school lunch with a different classmate each day, while an aide watches to make sure he chews and swallows his food properly. After watching older boys swallow pills at a summer camp for children with heart issues, Riley learned to do the same, impressing his medical team.
In many ways, he’s a typical kid who loves superheroes, trains and professional wrestling, a passion he shares with his dad, Darren O’Brien. This year, with his parents girding themselves against the possibility of a cold or flu, he started attending school for the first time. His favorite activities at school are recess and gym, where he loves to run, skip and hop on one foot. He won his school’s “Student of the Month” Award in December.
When he caught a virus last month and spent a few days in the hospital, he worried about missing school, while his parents worried about his recovery.
“Any time he’s sick with an infection, it raises his risk of rejection,” Carol O’Brien noted. “If it does, we’ll treat it and hope we just go to the next day.”
He talks at a breakneck speed — his mother has to remind him to slow down and speak clearly. He hugs his classmates goodbye at the end of each school day, a habit that has caused some consternation, but mostly understanding.
“We did all of this so he could live,” O’Brien said. “We have to just hope for the best.”
Kim Mulford: (856) 486-2448; firstname.lastname@example.org