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Wait for heart goes on for Auburn boy
(by Joan Demirjian - February 22, 2012)
Wait for heart goes on for Auburn boy
By JOAN DEMIRJIAN
Charlie McMicken, 3, of Auburn, is spending every day now in Cleveland Clinic, awaiting a new heart. He was admitted last October.
His parents, John and Sarah McMicken, are with him constantly, and he is never alone.
Charlie has cardiomyopathy, in which the heart muscle thickens and the heart does not pump efficiently.
He will remain at the hospital in Cleveland until a transplant heart is available, according to his mother. The heart size is based on weight, she said, and it's likely to come from a donor with a weight of about 60 pounds.
"We're hoping and praying for a heart," Mrs. McMicken said. Charlie is at the top of the list for his age.
He is small and fragile right now, but he is a happy little boy, Mrs. McMicken said. "He knows he needs a heart to go home. His spirits have been fantastic.
"We had been waiting for a heart, but his condition worsened in January, and he was moved to the pediatric intensive-care unit," Mrs. McMicken said.
Charlie was given a Berlin Heart, a mechanized unit that pumps the patient's blood and provides a bridge until a transplant is available. Developed in Berlin, Germany, it recently was approved for use in the United States, and Charlie is one of just a few patients using it.
Doctors have been dealing with blood clots forming in the heart, and he is being given blood thinners, according to Mrs. McMicken. However, the doctors said, if the Berlin Heart had not been available, her son would not be here, she said. "I'm in awe of this machine."
She said doctors diagnosed the cardiomyopathy when Charlie was 4 weeks old. They do not know if he was born with the disease or it was caused by a virus.
He is the youngest of five boys. Ryan, his oldest brother, is a graduate of Kenston High School. His brother Johnny is an eighth-grader, Jake is a sixth-grader, and Michael is a second-grader in Kenston schools.
"We have decided to donate his diseased heart for scientific study," Mrs. McMicken said.
The family has been supported by the community, she said. "We have been so fortunate. There has been an outpouring of caring and support." Even his nurses from the original unit when he was first hospitalized still check on him, she said. "They are very care giving."
Friends of the family are working with the Children's Organ Transplant Association to raise funds for the transplant-related expenses.
Local residents Mark and Katy Kalmeyer and Lianne Herbruck and Charlie's aunt from out of town are working to raise $65,000 for the heart transplant, according to Mrs. Kalmeyer.
Heart transplants often exceed $500,000, she said. The family has insurance, but it won't cover everything.
They have been making wristbands with the inscription, "A heart for Charlie." Volunteers are selling the bracelets at Kenston middle and high schools and at Kenston Community Education events. "We have other fundraisers in the works, and donations are always welcome," Mrs. Kalmeyer said.
They have a meal train, as well. "Volunteers sign up to bring the family meals at home," Mrs. Kalmeyer said. One parent is always at the hospital, and one parent is at home, she said. "Charlie is never alone," she said. "They stay overnight at the hospital."
The families became friends through their children's school sports.
"He is an adorable, blond 3-year-old who loves Spiderman," Mrs. Kalmeyer said. The goal is to make a miracle for Charlie, she said.
"It is amazing how people are reaching out and giving help," Mrs. Kalmeyer said.
More volunteers are welcome to help plan and implement fundraising activities.
Those who would like to donate to the fund for Charlie's care can call Mr. Kalmeyer at 440-867-5243, Mrs. Kalmeyer at 216-513-3214 or Ms. Herbruck at 440-543-1052.
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