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12-year-old Duluth resident inspires others after heart transplant

Kiarra Dixon does warm-up exercises with her classmates in choral class Friday morning. Dixon received a heart transplant in late September. Bob King / rking@duluthnews.com1 / 5
Kiarra Dixon, 12, holds her original heart that was removed during her transplant last September at the Mayo Clinic. Photo: Jenny Dixon2 / 5
Kiarra Dixon (left) and classmate Irene Xiong help each other during an in-class assignment to identify the characters, their disabilities and what they contribute to the world in the book "The Acorn People" during English class at Lincoln Park Middle School Friday morning. English is one of Kiarra's favorite subjects. Because her body is temporarily less able to fight germs, she must wear a mask daily to protect herself. Bob King / rking@duluthnews.com3 / 5
Kiarra Dixon, who received a heart transplant last September, hugs the container that holds her original heart in a vacuum-sealed bag. She hopes to have the heart cremated and incorporate the ashes into a necklace. Kiarra received her new heart from a 16-year-old boy. Bob King / rking@duluthnews.com4 / 5
Kiarra Dixon, who received a heart transplant last September, is proud of the orange belt she earned in karate, represented by the orange band she wears on her wrist. Bob King / rking@duluthnews.com5 / 5

The call came at 2:38 a.m.

Kiarra Dixon's wait on a heart transplant list was over, and her family had a four-hour window to get from Duluth to Rochester's Mayo Clinic. But Dixon, a seventh-grader at Lincoln Park Middle School, refused to go.

"I freaked out. I went from being a 12-year-old to a 3-year-old in about five seconds," Dixon said, about the late September call. "I was scared. I wasn't ready for it."

Her mother, Jenny Dixon, was terrified that this might be Kiarra's only chance at a new heart. She asked God for help, she said, and found the courage to tell her daughter that she needed to go, and she would do anything to get her in the car. With the stipulation that her best friend ride along satisfied, the three were on the road shortly after 3 a.m.

An urgent need

Kiarra was diagnosed with dilated cardiomyopathy, a form of heart disease, at six and a half months old, more than three months after her mother first noticed and reported symptoms. She suffered lengthy nightly coughing spells that ended in vomiting, and she wasn't gaining weight. Tests eventually showed her heart was pumping blood with only 8 percent efficiency, with a normal heart at 55 percent or above. She was put on medication, and for the next several years, lived a relatively normal life.

In 2015 her condition worsened, and doctors told her family she was at risk for "sudden death," Jenny Dixon said. Kiarra was placed on a transplant list. An internal defibrillator was installed inside her heart, but she grew sicker, and her heart function dropped dramatically. She was forced to carry a backpack at school that held a pump full of medicine, which a peripherally inserted central catheter administered to her body around the clock.

The need for a new heart became even more urgent in May of 2016, and she was placed on a high-priority list. The family continued living life, traveling to Walt Disney World by car on a 15-day excursion and taking long walks together when Kiarra was able. Four months later, well before it was expected, the call came.

'A boy's heart'

The Dixons arrived at Mayo Clinic by 7 a.m. Sept. 20, but surgery would still be 18 hours away. Kiarra couldn't eat, but was in good spirits, Jenny Dixon said. They spent the hours talking and laughing and playing games. She was at peace with what was to come, comforting her brother right before she was taken into surgery.

"She is very grown up for her age," her mother said. "I don't know if it's because of who she is or what she's gone through. ... It's been so hard as a parent not to take it away and do it for her."

Kiarra spent 12 days in the hospital and nearly three months at the Ronald McDonald House in Rochester with her mom, recovering.

"I have a boy's heart; it's a little weird," Kiarra said last week. It came from a 16-year-old boy from Indiana. Her mom plans to write to his family, and is struggling to find the right words.

"I constantly try to put myself in their place," Jenny Dixon said.

While they were home in time for Christmas, she said, the donor's family was having their first without their son.

Kiarra kept her own heart in the hopes it can be cremated, with ashes stored in a keepsake necklace. Oversized because of the disease, it's now in a sealed plastic bag tucked into a plastic container. She couldn't refer to her new heart as "her own" at first.

Jenny Dixon didn't realize how much she would grieve Kiarra's old heart. A transplant isn't a permanent fix, she said, and the longer Kiarra lived with her own heart, the better.

"She will likely get (another) one," she said, with the average life of a transplanted heart around 15 years.

Kiarra's greatly diminished immune system means extreme care must be taken, her mom said, so "we traded one set of problems for a new set."

But the family has so much to be grateful for, she said.

In Minnesota, 183 people wait for a heart transplant, 18 of them under the age of 18. In 2016, 66 Minnesotans received a heart transplant through November. Five of those people, including Kiarra, were under age 18.

'A village effort'

Kiarra returned to school at Lincoln Park mid-December. She wanted to surprise her fellow students, and did so with her signature bubbly humor, wearing a unicorn onesie. But she also wore a required face mask to protect her compromised immune system. At the request of Kiarra, students hadn't been prepared for her return to school.

The mask brought out a handful of rude comments from students who didn't know her or what she dealt with. Shortly after her return, school nurse Camille Murphy prepared a message about Kiarra's condition to be read to students by teachers in every advisory period. The school provided masks for kids to wear in solidarity, a successful endeavor that "made me super happy," Kiarra said.

Some students and staff were used to supporting Kiarra at school.

When she first began attending Lincoln Park, Murphy and others were tasked with amending the school's emergency plan. Staff were trained in CPR, an extra automated external defibrillator was installed and a plan involving the help of students was put in place for every class Kiarra was registered in. Kiarra kept a walkie talkie in her backpack. In an emergency situation, one student would retrieve the walkie talkie and call the office. Two students would call 911 and read from a prepared script. Another set of students would retrieve the defibrillator and one student would find the closest teacher while the classroom teacher performed CPR. Everyone was trained in the plan.

"It was a village effort," said choir teacher Deb DeVaney. "I was worried about her all the time."

Now that she's back, "kids have jumped in with their support," DeVaney said. "Everybody is trying to normalize it."

'A good place'

Kiarra's mask, to be worn for six months, is needed because of her medication. The medication reduces her body's ability to ward off germs but is necessary for her body to get used to a new heart. Kiarra is adjusting to other safety measures, like worrying about sanitizer, keeping her lunch in a private refrigerator at school and avoiding certain foods that don't mesh with her medication. She can no longer share food with friends at lunch. Every day she must weigh herself and take her temperature and blood pressure. Pills are taken at exact times.

Kiarra, a high-achieving student, is eager to get back into karate, where she has earned her orange belt.

"You wouldn't have known she was dealing with what she was dealing with even before the transplant surgery," Murphy said. "She never made issue about it."

Principal Brenda Vatthauer said she was "amazed by Kiarra's can-do" spirit. She first realized her tenacity when Kiarra wanted to participate in the annual "walk to school" day, which involves an uphill climb.

"Her mom said, 'it's up to her. She knows her body,' " Vatthauer said. "That showed me a whole new side of her as a sixth-grader. ... She's got that inner drive. It's going to be so fun to watch her grow and learn."

Kiarra is looking forward to riding her first roller coaster and chasing her brothers.

What she's gone through "hasn't exactly been easy," she said, clearly happy she got in the car that September morning. "I think I am in a pretty good place right now."