CHAMPAIGN — More than a year after her heart transplant, 8-year-old Macie Maier of Champaign could probably teach her fellow humans something about being happy.
Born with major medical issues, she’s undergone five open-heart surgeries, the first one soon after she was born, and is unable to walk or talk.
And none of that stops her from smiling, which she does a lot, or dancing by waving her arms or enjoying a swing ride, said her mom, Danielle Duncan.
“She’s literally always happy, no matter what,” Duncan said.
Macie was born with hypoplastic-left-heart syndrome, a congenital heart defect in which the left side of the heart doesn’t form properly.
She was also born with a blood-clotting disorder and a chromosomal abnormality that has caused developmental delays, Duncan said.
What led to her transplant in July 2019 was heart failure and the discovery of a large blood clot in her left ventricle a few months beforehand.
Because it would have been too dangerous to remove it, the clot was left in place until her transplant, Duncan said.
As she looks back now, Duncan said, it was a strange thing to pray for, that the blood clot would remain where it was — “please, God, don’t let it move” — as they waited for the transplant.
Macie had another setback during her transplant surgery — another blood clot formed in her left leg that damaged her lower leg and left her foot positioned at an angle, Duncan said.
While it may be a few years down the road, Duncan hopes her little daughter will one day be able to walk.
And despite everything that’s happened, Duncan prefers to focus on the positives.
A Stratton Academy of the Arts third-grader weighing in at 29 pounds, Macie is learning online this year, like her classmates, though school for her is one-on-one lessons with a special-education teacher.
Macie is still probably at about pre-kindergarden level academically, Duncan said, “but she has made huge strides this last year.”
Duncan describes her daughter as a spunky kid who is rarely upset and loves books, music, “Mickey Mouse Clubhouse” cartoons and riding in her special supportive swing in the backyard.
And “she’s a huge snugglebug,” Duncan said.
And when she lifts her daughter in her arms to dance, Macie joins in with her own arms.
“She does these adorable things with her arms. She shakes them all around,” Duncan said.
Duncan said she plans to gather a team to walk on Macie’s behalf Oct. 10 during the annual Champaign-Urbana Heart Walk, a fundraiser for the American Heart Association.
Because of the COVID- 19 pandemic, this year’s event won’t be a large group walk. Instead, participants are encouraged to get out and walk — while practicing good social distancing — wherever they are and connect with other walkers and the heart association digitally.
What Duncan wants others to know is the importance of being aware of congenital heart defects and of being prepared during pregnancy.
Macie’s heart defect was discovered during Duncan’s pregnancy, and Macie underwent her first surgery at 8 days old.
The annual heart walk in Champaign County is being chaired this year by Carle cardiologist Dr. C. Kenneth Bodine and Luke Sullivan, vice president of the Carle Cancer Center, Heart and Vascular Institute and Neuroscience Institute.
Bodine said the heart association raises money for research, education and community programs, including CPR instruction.
Cardiologists now treat many adults who were born with congenital heart disease, have had corrective surgeries and have made it to adulthood, he said.
“It’s basically from all of the research and innovations that have gone on over the years that children like that have been able to survive,” Bodine said.
The medical director for Carle’s cardiac rehabilitation center and echocardiography lab, Bodine said the heart association encourages taking charge of your own heart health and stresses the importance of lifestyle in preventing heart disease.
“It is the number-one cause of mortality and morbidity in this country, and a lot of it, the typical risk factors we’re dealing with, are preventable if people have a heart-healthy lifestyle,” he said.