FARMINGTON — Carter Gentle likes to play baseball, ride his bike, jump and run.

But some days, those things have to wait while he recuperates.

Born with congenital heart disease, Carter, 7, has had five open-heart surgeries, three pacemaker surgeries and multiple invasive procedures such as heart catheterizations.  

He had his first open-heart surgery when he was two days old.

“We didn’t know there was a problem and were getting ready to bring him home from the hospital,” said his father, Mark Gentle of Farmington. “The doctor came in, listened to his heart one more time and said he had a heart murmur.”

His oxygen level tested at only 60 percent. The family was immediately on its way to Barbara Bush Hospital in Portland, Gentle said.

On April 6, Carter passed out at the Mallett School where he is a first-grader. His mother, Sarah Gentle, who is a special education technician there, called Mark to come and get Carter.

After a pacemaker test, the hospital called back within 20 minutes to tell Gentle to get him to Portland. A pacemaker lead had broken and his heart was only beating at about 37 beats per minute, Gentle said. Seventy to 110 beats per minute is normal for a child his age.

A couple of days later they were back home and Gentle took off the bandages. He told Carter it looked great.

But when Carter looked in the mirror and saw his scars, he started to cry and sobbed for about 45 minutes, Gentle said. He thought people would think he was stupid or ugly.

“I tried to find a way to lift him up,” Gentle said.

He took a photo and posted it on his Facebook page asking family and friends to encourage Carter. The father expected a few responses.

An hour later, the photo had 2,000 likes. Before bedtime, the number rose to 250,000.  Now, it’s 1.55 million with most posted the first four days, Gentle said.

The post also has generated 100,000 comments and more than 100,000 people shared it on Facebook.

Many shared photos of their own scars, children with scars and words of encouragement for Carter and his family. Many were humorous, Mark said. One person had been scarred from a fight with a tiger. Another was bitten by an alligator.

“It has been therapeutic for Carter,” his father said. “Many told him his scars made him look like a superhero.”

It also showed him he was not the only one. He realized his situation could be worse, his mother said.

It has been a hard year, she said. In February, a stent was put in to increase blood flow from the heart to the right lung. He couldn’t breathe well.

Carter has missed about 70 days of school this year. When there, he often could not play with his friends and felt like he didn’t fit in, she said.

In just eight months, he has had two heart catheterizations, a fifth open-heart surgery and a pacemaker operation.

There are more surgeries ahead, Mark Gentle said. It will probably be a lifetime thing.

“We hope for a miracle but realize this is the hand we were dealt and try to make the best of it,” he said. “We believe and put it in God’s hands.”

A longtime country music singer and songwriter, Gentle wrote “Carter’s Song,” which is posted on YouTube. The song shows a glimpse of what it is like for a family facing congenital heart disease, Sarah said.

Carter also plays guitar, sings and has started writing his own songs, Sarah Gentle said.

Mark and Sarah have received thousands of messages of support, many expressing how much they have helped other children, he said.

For Mark, the postings show how huge a problem the disease is.

“Over 100,000 babies will die before their first birthday worldwide due to it,” he said. “Five times the amount of funding is spent for research on all pediatric cancer than on CHD.”

Once the online posting went viral, the story was featured on NBC national news. Other news media have since called.

The attention has provided an opportunity to bring awareness to congenital heart disease and to support other families dealing with it, Mark said.

Sometimes it is about sharing what happens when a child comes out of surgery, Sarah said.

“It is hard to know what that picture is if you haven’t seen it,” she said.

It is difficult to see a two-day-old baby post-surgery with numerous tubes and a ventilator and not be able to do anything, she said.

The couple is trying to plan an event to pull together local families affected by the disease.

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