Fundraiser, camp benefit kids with heart problems
BY JASON ASHLEY WRIGHT World Scene Writer
Thursday, February 07, 2013
2/11/13 at 5:17 PM
Correction
This story originally contained an incorrect name. The story has been corrected.
Lucas Wilson is a young man of few words.
"You might get him to smile if you talk about Minecraft," his mother, Colleen Wilson, said while they sat on the couch in their family's living room.
It's a computer game, she explained while looking at him with a soft smile, hoping he'd fill in the blanks.
"Nonviolent," she added, "but you do kill a pig."
"For pork chops!" her husband, Tony Wilson, said from the kitchen. That almost made Lucas laugh.
Lucas seems like a normal 12-year-old boy.
"He's just a really funny kid ... hilarious," Colleen Wilson said.
Funny, normal and easy-going as he is, Lucas basically lives in congestive heart failure, his mother said. His condition is hypoplastic left heart syndrome (HLHS).
That's how Lucas got to go to CHAMP (Children with Heart Abnormalities have Much Potential) Camp last summer, a camp for kids with heart abnormalities - a camp that will get a leg up thanks to Fleet Feet's Sweetheart Run on Feb. 16. Heart Week, by the way, starts Thursday and runs through Valentine's Day.
Funded by Saint Francis Hospital Foundation, CHAMP Camp is held each summer. Nurses and doctors volunteer their time to help staff the camp and ensure the safety of the children because these kids don't typically get to have a normal summer camp experience because of health concerns.
"Which side of your heart are you missing?" Colleen Wilson asked him.
"The left side," he replied, looking up at her - one atrium and one ventricle.
Lucas was born full-term Jan. 19, 2001, weighing 8 pounds and 8 ounces, "with a full head of red hair," Colleen said.
It was a fast delivery, too, and nurses thought the blue on his skin was from bruising.
They heard a heart murmur shortly after he was born and scheduled an outpatient appointment with a pediatric cardiologist a couple of days after Lucas was to go home.
Heart murmurs are common, Colleen Wilson explained, and often go away on their own. Some can exist throughout life without any problems.
Although an echocardiogram would have been done at the cardiologist's office, the Wilsons' pediatrician "had a bad feeling" and decided to do it before they were discharged.
"If they had not done the echo, Lucas would most certainly would have passed away," his mother said.
He would have died, most likely within 24 hours of going home, as soon as the hole in his heart that was keeping him alive closed naturally, which happens 24-48 hours after birth.
As soon as they did the echo, they contacted the Children's Hospital at OU Medical Center in Oklahoma City, and Lucas was life-flighted there for surgery, where he received medicine to keep the hole in his heart open until surgery could be performed.
By that time, his kidneys had already begun failing from lack of oxygen.
"I didn't know how to really process the information," Tony Wilson said after learning of his newborn son's condition. "I was kind of numb."
With no room in the helicopter, the Wilsons had to stay behind and watch from the helipad.
"I don't think you'll see him alive again," Colleen Wilson recalled a doctor telling her.
The Wilsons were given only three options, she explained. The first was to do nothing, and Lucas would have died within a day or so.
Second, they could wait for a heart transplant. But Lucas wasn't stable enough to wait for a healthy heart, as healthy infant hearts are hard to come by. Besides, heart transplants on infants are risky because of the danger of rejection and infection.
Their third option was best: a series of three open-heart surgeries, which would put off the transplant for when he was older and stronger, when he may have a better chance of getting a heart.
'A normal kid'
Lucas was just six days old when he had the first surgery.
The surgeries reroute the blood so that the right side, which would normally pump blood just to the lungs, can work on pumping blood to the whole body, Colleen Wilson said. Blood is no longer pumped to the lungs but passively flows into them.
To relieve pressure, some blood does not get oxygenated at all, so Lucas' oxygen saturation is lower than most healthy people, she said. Because of that, it's noticeable if he's cold. If he has been active, he'll display a blue tint.
"The series of surgeries basically buys him time," his mother said. "He will need a heart transplant in the future. It could be next week or it could be 10 years from now."
Some kids who had the same surgeries as Lucas are in their 20s and have not needed transplants yet.
"We've had years now of really good health," she said, mentioning a time when he was 4 and developed a rare form of plastic bronchitis, one related to his heart defect. It has a high mortality rate, and there are only a handful of documented cases of kids surviving it.
"Lucas is very lucky," Colleen Wilson said.
Although he can't play contact sports, Lucas is still active.
"His heart is pushed to the max just keeping him alive, so we do not want to put more pressure on it than necessary," she said.
Unfortunately, as he gets older, his health will deteriorate, as the half of his heart that is left wears out from doing more than it was designed to do.
In the mean time, he goes to school and lives his life like millions of other kids across the country.
Some of those kids, though, aren't quick to believe his story.
"Nobody ever knows he's battling his own battles," Colleen said.
Recently, Lucas was telling her about a kid at school who has hip problems.
"At least people believe something's wrong," Lucas said.
Other kids hear he has half a heart and think it's impossible.
"It is possible," he countered, "because you're talking to me right now."
Lucas has expressed frustration in the past that he can't play hockey like his dad or football like his friends, his mother said. He's shy about his scars, so he doesn't like wearing a bathing suit.
And he's aware that, someday, he will need a new heart.
"We have always been as honest with him as possible and want him to be prepared," Colleen Wilson said. "I think for the most part he thinks of himself as a normal kid."
'Heart hero'
Recently, the Wilsons mourned "a heart hero" of theirs, someone who lost her battle with HLHS a few months ago. She was the oldest child they personally knew with HLHS, which makes Lucas the oldest living they now know.
"That was rough. Very rough," Colleen Wilson said. "She was the one that talked Lucas into going to CHAMP Camp and told him how fun it was. She was just this very bright special girl.
"We sort of felt like our number is up next. But we try to keep those thoughts away from Lucas. He just wants to be normal."
Hence CHAMP Camp, where kids like Lucas can have the camping experience they normally wouldn't be able to have - and to have it safely.
"He made new friends, and he really came out of his shell," said Colleen Wilson, who mentioned her son having a water gun battle with his cardiologist, as well as going on a zip line.
Plus, the counselors there are "amazing." More than likely, he'll be going back this year, they said.
First up, though, is the Sweetheart Run, during which Lucas and his brother, 14-year-old Daniel, helped man a table last year for Mended Little Hearts. It's a nonprofit, volunteer-based organization that works nationally and in communities to support children with congenital heart defects and their families.
Like she did last year, Colleen Wilson, who has completed more than 40 races, including five half-marathons and her first full one last fall, will be running the 10k and the 5k.
"You gonna go cheer me on?" she asked Lucas.
"Is it a weekend? I might be sleeping," he said, smiling, and making his mom laugh.
House Bill 1347
Colleen Wilson's 12-year-old son, Lucas, was born with a heart condition called hypoplastic left heart syndrome (HLHS).
It is important to her that no child be sent home undiagnosed with a heart defect, which pulse oximetry could prevent, she said.
Pulse oximetry is a cheap, noninvasive test that measures the body's oxygen saturation, Wilson explained.
"If all newborns received a pulse-ox test, many heart defects like Luc's would be found before kids are sent home," she said.
That's why Wilson mentioned House Bill 1347 by state Rep. Dan Kirby, R-Tulsa. The bill would require hospitals and other birthing facilities to perform a pulse-ox screening on every newborn.
Pulse oximetry detects congenital heart defects by measuring saturated oxygen in hemoglobin.
The bill is assigned to the House Public Health Committee, where members will review the legislation and vote to send it on to the full House, according to a release public on the Oklahoma State Legislature's website.
Had Lucas Wilson received pulse oximetry as soon as he was born when doctors heard the heart murmur, Wilson said her son would have immediately received an echocardiogram rather than waiting 24 hours and almost going home, where he would have died.
For more about pulse oximetry in newborns, read the policy position from the American Heart Association at tulsaworld.com/ahapulseox
SWEETHEART RUN
Fundraiser for CHAMP Camp for
kids with heart abnormalities.
Feb. 16, with 5k at 7:45 a.m., 10k at
8:30 a.m., 1k Fun Run/Walk at 8:35
a.m.
Fleet Feet Sports, Blue Dome District,
418 E. Second St.
Fees range $16 for Fun Run to $83
for 5k and 10k couples teams.
For more, including registration, visit
tulsaworld.com/sweetheart2013.
Original Print Headline: Whole hearted
Jason Ashley Wright 918-581-8483
jason.wright@tulsaworld.com
Associated Images:
Lucas Wilson sits with his mother, Colleen Wilson, at their home in Collinsville. Lucas, who has a heart condition called hypoplastic left heart syndrome, will cheer his mother on as she runs in the upcoming Sweetheart Run. MATT BARNARD/Tulsa World
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