By Andra Bryan Stefanoni
To the casual observer, it sounds odd: One of their triplets has a heart defect, and Jayme and Chris Harper are grateful.
“It could have been much worse,” Jayme said. “We just thank God every day she’s alive. We’re grateful. Be thankful for what you have, and not what you don’t have.”
What they have are three girls they love, and despite odds that were stacked highly against their favor, they will be celebrating their second birthday today.
The family also is embarking on a five-month campaign to raise money and awareness for the American Heart Association, as one of the girls, Lauren, was chosen last month to publicly represent the Four-State Heart Walk in Joplin in September.
She’s the perfect candidate, her mother said. She has had three heart surgeries, and is fitted with a pacemaker that continually monitors her heart rate, and beats for her if needed.
“We want to get the word out that it’s just not an elderly person’s disease,” Jayme said.
The triplets were born May 17, 2011, at Freeman Hospital a full eight weeks prematurely. Five days later, their home on Jackson Avenue was blown away by an EF-5 twister while they continued to struggle in the neonatal intensive care unit NICU.
Addison, the feisty one at 1.13 pounds, had been born first, followed by Lauren, the more laid-back of the three, weighing in at 2.2 pounds. Reagan, the last to make an appearance, was the biggest at 3.11 pounds.
Reagan was the first to leave Freeman in early July 2011, weighing in at 6.9 pounds. Addison was next on Aug. 11, weighing 5.7 pounds. But Lauren required multiple surgeries at Children’s Mercy in Kansas City to correct a congenital heart condition, and wouldn’t come home for good until December that year.
In the year following their birth, their parents shared updates with the Globe on several occasions: Finding and settling into their new home, the generosity of friends and strangers, their first Christmas together.
Their medical ordeals are far from over, however.
“We still go to Kansas City every eight weeks for Lauren and Addison,” Jayme said. “We’re getting ready to go see the kidney doctor for first time, because Lauren also has only one functioning kidney.”
During one of her heart surgeries, a vocal chord was accidentally clipped and therefore paralyzed, which necessitated a feeding tube because it limited her ability to swallow. It also limited her speech.
“She’s speaking a little bit now, but she will be limited. She can hear us; you can understand her. Like she says the basics — ’Mom,’ ‘Dad,’ ‘Nana’. But unfortunately for her birthday, we can only give her icing. The feeding tube will be there awhile,” Jayme said.
But that hasn’t deterred the family for looking outside of themselves.
“We went to the Heart Walk last year in Joplin at Missouri Southern, to test the waters,” she said. “We were invited by her heart doctor’s office in Springfield, and we thought, ‘What a great thing to be in.’
“Then we decided to challenge ourselves. We said, ‘We’re going to give back. We were given this gift, this child.’”
The family registered for the Heart Walk in Springfield, held this April, and got busy raising money. Their total was $1,100.
During conversations with organizers, Harper shared their experiences and previous Joplin Globe articles.
“They heard our story, and they asked us if Lauren would be the face of the Heart Walk in Joplin,” Jayme said. “I told him, ‘Put us to work any way you can, because it’s our chance to give back, because the American Heart Association had helped Lauren so much’.”
Their goal for the Joplin Heart Walk is to raise $2,200 — double what they raised for Springfield. Having just begun, they have $50.
“But hey, that’s a foot in the door,” Jayme said.
They have asked those planning to attend her birthday party to, in lieu of gifts, give donations for the Heart Walk.
They also have embarked on a media campaign in partnership with the American Heart Association to promote the event.
“We do a lot of media stuff, they’ll use her photo on posters, and when we get to the event, we’ll go up on stage and tell our story,” Jayme said. “We’re trying to spread awareness that it’s not just an old person’s disease. It happens in little people.”
An estimated minimum of 32,000 infants are expected by the American Heart Association to be affected each year by heart defects. Of these, about 25 percent require invasive treatment in the first year of life.