Less than six weeks after he had open-heart surgery, Hunter Dahlin will join the mob for Saturday's Heart Run as an entrant in the mended-heart division.
But whether he'll wear one of the red caps given to participants who are current or former heart patients depends on if his mom can figure out how to keep the adult-sized hat from swallowing 7-month-old Hunter's entire head.
Hunter, this year's youngest mended heart, will take in the sights and sounds of one of Alaska's biggest footraces from the comfort of a double stroller that he shares with his 3-year-old brother Skylar. With them will be mom Amy and dad Matt, an Air Force family whose lives were upended in December when Hunter -- then three months old -- was diagnosed with a hole in his heart that required open heart surgery.
A three-hour surgery March 21 repaired the primum atrial septal defect and revealed another hole, a cleft mitral valve, that was also repaired.
Today, Hunter looks and acts like a healthy 7-month old. The lone clue to his troubles is a thin red scar about 5 inches long that runs vertically down his chest.
"We've been teasing him that chicks dig scars," Amy said, "so occasionally if I go to show off his scar to someone, he gives them this slow smile.
"His scar will fade in time. Between that and chest hair, you won't even notice it."
Other than annual checkups, a faded scar is likely to be the only lasting effect of Hunter's congenital defects and the subsequent surgery.
And that is why Aaron Edwards was all smiles Saturday when the Dahlins showed up at the University Center to pick up their race bibs and Hunter's red hat. Edwards was manning a booth run by Mended Hearts, Inc., a group that provides support for heart patients and their families.
Edwards, 30, has had four open heart surgeries and is due for a fifth in about three or four years. He was born with an atrial septal defect (ASD) and several other complications, but 30 years ago the procedures that fixed up Hunter weren't in use.
"The neat thing is he probably won't have anymore surgeries, whereas I still have to have things done," Edwards said.
Edwards, a preschool teacher in Anchorage, had his first surgery when he was three days old and his second when he was 8.
By the time he was 8, "they had the technology to do all the major corrective stuff, the stuff they've done on Hunter already," he said. All of the subsequent surgeries have been to replace an artificial valve put in when he was 8 to correct a defect Hunter does not have.
Seeing a happy and healthy Hunter on Saturday made Edwards thankful for his own health and for the advancements that have come during his 30 years.
"It was encouraging to see Hunter for a couple of reasons," he said. "One, I can almost picture myself having come out of a surgery when I was younger and it made a big difference in how much energy I had and how better I felt, so I'm encouraged that he'll have a better life now that he's had those corrections.
"The other thing is, it kinda reminds you how important each day is and helps you live life to the fullest."
Born in a cabin in Cooper Landing, Edwards was a "blue baby," meaning he didn't have enough oxygen in his blood.
"My dad was an EMT and my uncle had a float plane," he said. "They flew me to Anchorage and then we flew right out to Portland.
"... Because they hadn't figured out all the technology to fix my heart, when I went to school I wasn't allowed to do recess because I only had so much energy. The thing about Hunter, he won't experience that -- they fixed him right up."
Edwards and his wife, Sarah, have two daughters -- 5-year-old Clover and 3-year-old Esther. Clover has a heart murmur that doctors hope she will outgrow, Edwards said.
The couple knew the children could inherit one or more of Edwards' congenital heart defects "and we were definitely worried," Edwards said, "but it wouldn't stop us, especially since I had a positive experience."
There is no history of congenital heart problems on either side of the Dahlin family. And unlike Edwards, Hunter wasn't born blue. But at two months, he had gained only two ounces since birth.
"They started doing weight-checks and had us adding formula," Amy said. "He was gaining, but he wasn't gaining what he was supposed to. At three months, his pediatrician heard a heart murmur."
A chest X-ray showed that half his heart was enlarged. An echocardiogram revealed the ASD. Fixing it would require open heart surgery, which isn't available in Alaska for children. The Dahlins made plans to have the surgery at a Kansas City hospital, where they would be near Amy's parents.
Hunter was three months and one week old the day of his operation. When Amy and Matt saw him afterward in the intensive care unit, he was asleep and on a ventilator.
"It hit us after the surgery -- the only thing keeping your infant alive is a machine," Amy said. "It's very humbling."
The day of the operation was the day the Dahlins decided to enter the entire family in Saturday's Heart Run, a 32-year-old race that in recent years has raised more than $100,000 annually, including $137,000 last year and $138,000 in 2009, for the fight against heart disease and stroke. At the same time, it raises awareness of the country's No. 1 and No. 3 killers.
"We were sitting there right before the surgery and I said, 'We should sign up for the Heart Run,' '' Amy said. "We need to go do this for Hunter. It's a way to honor Hunter, a way to support him."
Reach Beth Bragg at bbragg@adn.com or 257-4335.
Last chance to sign up
Today is the last chance to sign up for the 5-kilometer competitive race in Saturday's Heart Run. You can register or pick up your bib from 4:30-7:30 p.m. at the University Center. The only registration available on race day is for the untimed 5-K or 3-K events.
By BETH BRAGG
bbragg@adn.com