January 14, 2013 10:35 pm • By DEB NICKLAY(0) Comments
SHEFFIELD — Madisyn Harper was only 14 weeks old when she had her first open heart surgery.It would be the first of 11 operations.
Yet, it is her next surgery that is the most anticipated and perhaps most important. And it could happen any time.
The West Fork Middle School eighth-grader, 13, is waiting for a new heart.
“The call could come at any time; from the time we hear, we need to be prepped and ready to go in four hours,” said her dad, Glen.
You wouldn’t think that such a strong girl would be shy, but on this day she was.
She worked feverishly on homework, although everyone sitting at the kitchen table at her rural Sheffield home knew the industry was due as much to her reluctance to talk to a strange reporter as to her love of math.
But that was OK — given her history, she ranks high on everyone’s “amazing” scale.
Madisyn was born with an atrial septal defect, or ASD. In simple terms, ASD is a hole in the heart. Her older sister, Samantha, 14, was also born with ASD.
While Samantha’s defect was comparatively easy to repair after two surgeries, Madisyn’s condition was among the most difficult of ASDs: Her heart had only one upper chamber when there should have been two.
The severity of the defect led to the multiple surgeries for a range of issues, from valve repairs and removing scar tissue to insertion of pacemakers.
Despite all of that, her heart function took a dramatic downturn over the summer and fall months last year.
When she saw her doctors at Children’s Hospital in Minneapolis in October, her heart function had dropped to under 20 percent when it had been more than 50 percent the previous May when she had surgery on an aortic valve.
The success of a special procedure, the implantation of a biventricular pacemaker, was not doing the job.
It was clear it was time for a transplant, to be done at Mayo Clinic in Rochester, Minn.
“Right now, her heart is working at less than 10 percent (function),” Glen said. “The rest of us would be dragging around, hardly able to do anything. In Maddie’s case, she hasn’t really known anything else.”
Part of the reason she can be active today is a small machine that she carries at all times. Via an intravenous line, she receives an injection of the drug milrinone which, in layman’s terms, helps a heart in failure.
At night, while most of of our hearts slow to well under 100 beats per minute, Madisyn’s jogs at 105 beats per minute due to the milrinone, Glen said.
“She loses one to two pounds every night” as a result, he said.
“If you lay in bed and feel like crap — that’s the way Madisyn feels all the time, only that is the only way she’s ever felt,” her father said.
Yet unless you saw the pack she carries, you would not know she is ill. She is an honor roll student, continues to attend dance class when she can and is an assistant manager of a school basketball team.
Her mom, Kaci, and Glen have taken off work to be with her through all of her surgeries. Glen is an engineer with American Tool and Engineering Inc. in Greene and Kaci is employed at the Principal Financial Group.
Kaci said Madisyn is well known among the cardiac team at Children’s Hospital in Minneapolis — so well that Dr. Amarjit Singh, who treated her for years, continues to call and sends emails to the family even though he is retired.
“It is like family,” Kaci said.
Despite her small size — she weighs 79 pounds — she is tough, said her grandmother, Valerie Borseth of Mason City.
Borseth said her granddaughter has indicated more than once that she wants to be a pediatric cardiologist.
“She is very serious about it,” she said.
Borseth chuckled when recalling one of Madisyn’s hospitalizations. So familiar was Madisyn with procedures that upon arrival she bypassed the Heart Clinic’s front desk, went into one of the rooms and “began hooking up her equipment.”
One of the new nurses who did not know Madisyn was confused.
“The other nurses told her, ‘No, she knows better than anyone what she’s doing,’ ” Borseth said.
When the nurse stood and observed her work, Madisyn looked up and grinned, saying, “Some day, you’ll be working for me.”
Waiting for a new heart will be measured against that dream.
“She is very mature — an adult in a child’s body,” Borseth said. “She can sit and talk about her condition in a very mature, adult way — she gets it.”
“She says she wants to help other little kids,” Kaci said, “that she knows just what they are going through.”