By AMERICAN HEART ASSOCIATION NEWS

1216-SFTH-Cox_WP

Watching 7-year-old Ian Cox run and play with his little brother, it’s hard to imagine he was so fragile at birth.

Like other boys his age, he loves building things with Legos and Playstix, and dressing up as superheroes, particularly the Samurai Power Ranger.

“He wanted to make sure I told you specifically the Samurai Power Ranger, not just any Power Ranger,” said his mom, Tracy Cox.

Ian’s arrival was initially a huge relief for Jimmy, who was anxious throughout the pregnancy, recalling the grief after his mother’s miscarriage when he was 11.

“That was my biggest fear,” Jimmy said. “Every time we went in to the doctor, I just wanted to hear that heartbeat and see the baby move.”

As a pediatrician did initial checks, the couple from Chesapeake, Virginia, could hear their newborn son whimpering.

“A nurse said, ‘Make sure he’s crying so you know he’s getting enough oxygen,’” Tracy recalled.

Ian was abruptly taken to the nursery, where a pulse oximetry test showed he had dangerously low oxygen levels, a sign that his heart wasn’t pumping enough oxygen-rich blood to his tiny body. Tracy’s obstetrician told the couple their son had a heart problem and would be immediately transported to a nearby children’s hospital.

“I just went into survival mode,” he said. “I told Tracy’s family, ‘I don’t care who comes, but someone needs to get in a car or get on a plane and get here.’”

Jimmy and Tracy Cox with 3-day-old Ian. (Photo courtesy of the Cox family)

Jimmy and Tracy Cox with 3-day-old Ian. (Photo courtesy of the Cox family)

Tracy recalled her shock and fear when the transport team brought Ian into her hospital room.

“I just told him that I loved him,” she said. “I didn’t even have a chance to hold him, only touch his foot.”

The day Ian was born, he had a stroke. But he soon also had a diagnosis: transposition of the great arteries, a congenital heart defect in which the two main arteries carrying blood away from the heart are reversed. Blood was being sent to his body without first going through the lungs to get oxygen.

Nine days later, Ian had open-heart surgery.

“Two days after surgery, the nurse said, ‘OK, time to treat him like a normal baby,’” Tracy said. But bringing him home, without the safety net of the hospital, scared her. Yet at the same time, “there was also great joy and huge relief in the fact that he was coming home,” she said.

Despite some complications, Ian has mostly grown up as a normal boy. He has a form of cerebral palsy called diplegia, which became evident when he was learning to walk as a toddler. The condition is mild, and Ian uses a combination of exercises and braces to prevent him from walking on his toes.

“It hasn’t slowed him down or stopped him,” Tracy said. “He’s a little clumsier than others, but he’s very active and loves to run and play.”

Ian Cox (wearing green) with his mom Tracy, brother Isaac and dad Jimmy on a recent vacation. (Photo courtesy of the Cox family)

Ian Cox (wearing green) with his mom Tracy, brother Isaac and dad Jimmy on a recent vacation. (Photo courtesy of the Cox family)

Over the past seven years, the Coxes have worked to learn all they can about congenital heart defects, which affect about 40,000 babies born in the United States each year. About a quarter of those require surgery or other treatment during the first year of life.

“It’s opened my eyes to see what’s out there and made me more thankful for what I have,” Tracy said.

She appreciates the research that allowed doctors to quickly identify and treat Ian’s heart condition.

And given that the first patients who underwent the procedure that saved Ian are now in their 30s, “how can what we learn from them help my 7-year-old,” Tracy said. “There are more adults living with CHDs than ever before. Research is critical in ensuring longer and healthier lives for these individuals.”

The Coxes have connected with other CHD families and shared Ian’s story through social media. They also regularly participate in the American Heart Association’s Hampton Roads Heart Walk to help raise awareness for heart health.

“You don’t have a choice what happens to you in life, but you do have a choice for how you handle it,” Tracy said. “So just fight through and make the most of what you have.”