By JON BAKER

PAWTUCKET  —  On this particularly warm afternoon, Will Aren Carlson — still three months shy of his third birthday — sits in his Daggett Avenue living room, playing with his beloved train set. Occasionally, he lifts his eyes to the television, flashing scenes from a favorite cartoon, “Max & Ruby.”

When his father, Derek, offers the toddler another trailer to tinker with, Will exults, “Thank you!”
“He has the best personality, and he’s so easy-going,” grins his mom, Kelli, watching from the couch. “He’s not shy at all. He loves to play with other kids, even adults, but he’s just as happy playing all by himself.”
Life hasn’t always been so joyous for the couple, or young Will, whom doctors diagnosed with a congenital heart defect just 18 hours after his birth on Dec. 17, 2005 and — later — two more. In essence, the entire Carlson clan — including grandparents, aunts, uncles, cousins, etc. — have experienced an array of emotions since Will came into the world.
Nevertheless, something good has come out of all those months of distress and fear: With help from a Warwick couple, Derek and Kelli have created “Helping Hands, Healing Hearts,” a Pawtucket-based organization designed to bring together those who have children with CHDs and provide parental coping mechanisms.
“We started it in May 2007, and the goals are to reach out to other ‘heart’ families and support them in whatever they need — be it emotional, physical or even financial,” said Kelli, 33, a special education teacher at Franklin’s Jefferson Elementary School. “We have monthly group meetings at the Warwick Public Library, and they’re open to entire families, including the kids. The reason: We don’t want those who can’t get a babysitter not to come and be involved, let it all out.”
At this point, “Helping Hands, Healing Hearts” has attracted 25 families from as close as Seekonk and Barrington and as distant as Narragansett and Norwood.
“It was relatively easy to start it,” Kelli offered. “We just scheduled some group meetings, without any real advertising, and it just kind of took off. It was all word of mouth. Now, we not only have a website, but also a relationship with the American Heart Association.”

***

How this came to be is both a scary and uplifting story, and it all started at 2:17 a.m., Saturday, Dec. 17, 2005 at Women’s & Infants Hospital.
“Derek was in the delivery room with me, and everything was fine,” Kelli recalled. “Actually, Will received perfect ‘10s’ on the APGAR scale (acronym for Activity/Pulse/Grimmace/Appearance/Respiration). I was really tired, but also elated. We had a healthy baby boy!”
Not quite 18 house later, between 7-8 a.m., a nurse entered the room to take Will’s vital signs.
“Derek and I were talking, and the nurse said -- very subtly -- ‘I’m going to take him back to the nursery,” Kelli said. “She told us his heart rate was really fast, and that it was called superventricular tachycardia. Evidently, it was 280 beats per minute, instead of just 100.
“After about 20 minutes, I turned to Derek and said, ‘You know, she’s been gone a long time,” she continued. “Not long after, a man came in and said, ‘There’s a problem with Will’s heart. We’re going to take him to the neo-natal intensive care unit’ … I freaked out. It couldn’t have been more than five minutes later when both sets of grandparents came in and asked, ‘Where’s the baby?’ They didn’t know anything was wrong. We said we didn’t either.”
Stated Derek, 38, Roger Williams University’s head baseball coach: “We didn’t know what was going on. It was very well-hidden. I’m sure (the nurse) didn’t want to scare us. Finally, the cardiologist came in with the NICU head, and we were told he had an arrythmia problem. They didn’t tell us much, except there could be several reasons for such episodes.”
The Carlsons later discovered their newborn boy had a defect named Wolfe-Parkinson-White Syndrome. Physicians wanred them -- after sending them home on Dec. 23 -- to keep a close eye on him.
During the evening hours on Christmas Day, they noticed Will wasn’t breathing normally, so rushed him to Hasbro Children’s Hospital.
“We thought he was going to die; we later discovered he had congestive heart failure,” Kelli said. “We overheard the nurses talking, and we thought he was gone. We were out of our minds … On Dec. 26, Will had another episode of WPW, and they couldn’t stop it with medications. It lasted almost an hour, and we asked the medical personnel to call the the pediatric cardiologist. They didn’t feel it was necessary to make such a call.”
Added Derek: “We felt it necessary, at that point, to request a transfer to Boston Children’s Hospital. Will was 10 days old when he was diagnosed with a second, more serious CHD called Mitral Valve Regurgitation. In short, that meant he had a deformed mitral valve, which feeds oxygen-rich blood to the lungs. It means his heart had to pump two or three times as hard to get the same amount to the lungs. It just couldn’t close all the way.”
With the boy suffering from MVR, which caused pulmonary hypertension and tricuspid valve regurgitation, and because doctors in Boston couldn’t control the WPW, they opted for surgery.
“A surgeon placed a catheter in Will’s groin and up to his heart, and burned an extra electrical pathway to remedy the problem causing the WPW,” Derek said. “That was on Jan. 19, and we were told if he didn’t have another episode for a year, that defect would be considered remedied.
“Still, we had to deal with the mitral valve problem,” he added. “We were discharged on Jan. 23, but told he would require multiple surgeries through his childhood and adult life, the reason being that valve grows, obviously … It was like being in a boxing ring. You get jabbed time after time, and you’re stunned, and then you receive a roundhouse punch to the head. He was going to need a lot of surgeries.”

***

In mid-March, the couple took Will back to Boston for four days of testing before a slated surgery. That’s when they discovered the mitral valve had begun compensating for its deformity.
“Doctors said they didn’t know why, but that it was a great find,” Kelli said. “They were going to postpone surgery indefinitely. Every successive visit has indicated his heart is functioning as close to normal as possible. We were thrilled.”
Kelli immediately flashes back when pondering how the Carlsons met Scott and Melinda Tavares of Warwick.
“I remember six days after Will was born at Women’s and Infants, we were getting our discharge orders when we saw a baby being rushed into the bed space next to where Will had been,” she said. “They brought in a priest, and wheeled in the baby’s mother to say ‘Goodbye.’ They were rushing him to Boston. I tried not to watch, but you do anyway.”
Just after Christmas, Kelli recognized the mother and asked if her son had been born in Providence. “She looked at me like, ‘Who the heck are you? Why are you talking to me?’ I said, ‘My son was in the bed next to yours,’ and we quickly talked about us being from Rhode Island, and how our boys were both born with CHDs.”
It didn’t take long for the relationship to grow.
“We were there together for the next four-plus weeks, and we became so close,” Kelli said. “When we were both cleared to go home with our babies, we continued to talk about things that only another heart family can understand. I know we were thinking, ‘Thank God we have each other.’
“Most families in similar circumstances leave, the parents are on their own,” she added. “We figured Rhode Island was a small enough state where we could meet on a regular basis. We later reached out to other communities to help spread awareness.”
It does so via meetings, but also monthly “Moms’ Night Out” gatherings, etc. They even had a PawSox Night, and are currently looking forward to an evening at WaterFire.
“Our message is to support families affected by CHDs, and act as a resouce for communities to help raise awareness,” said Melinda Tavares. “One in 100 babies are born with a CHD, which is more than those with autism. It’s going very well.”
For more information, check out the website riheartgroup.com or send a letter to Helping Hands, Healing Hearts, P.O. Box 2113, Pawtucket, R.I. 02861.