'A wonderful, full life' - 5-year-old Maci Whisner leaves her imprint on the world

With her big, blue eyes, strawberry blonde hair and infectious smile, Maci Whisner captured the hearts of thousands in her five years on earth.

Whether she was laughing at a favorite show, playing with her siblings or cuddling with her parents, her life’s journey — from infancy she wasn’t supposed to survive to her very last breaths — drew the support of followers around the world.

Whisner was born on April 14, 2016, with hypoplastic left heart syndrome (HLHS) along with other medical complications and was not expected to survive her first week on earth. But even after three open-heart surgeries and countless setbacks, she fought for life.

At 1:47 a.m. Sunday, she finally surrendered — but not without leaving her imprint on the world.

Abbey's Road:'She will not survive this.' A lesson in joy through rooting for Maci Whisner

“I know you’re up in heaven with a whole heart now. Running again, just like you used to. But no more shortness of breath or cyanosis, or breaks,” Maci’s mother, Karissa, wrote on Maci’s Facebook page, Maci’s Mended Heart. “Run free baby girl. I bet there are so many people up there who are flooding you with kisses and hugs and welcomes right now. I heard there’s lots of puppies there too that are probably giving you so many puppy kisses right now and making you giggle.”

The beloved 5-year-old had been receiving hospice care in the family’s home for several weeks.

“Maci took her last breath in my arms tonight, surrounded by family—her grandparents, siblings, cousins, aunts and uncles. She was loved on by all of us until the last minute, and then went peacefully to heaven,” Karissa wrote.

When she was 20 weeks pregnant with Maci, Karissa went in for what she assumed would be a normal ultrasound; she and her husband, Josh, were stunned when doctors realized their baby girl only had half a heart.

Initially, doctors at Nationwide Children's Hospital in Columbus were hopeful that they could do surgery as soon as Maci was born. However, they realized she had several more defects that made surgery much riskier. 

Josh and Karissa, who lived in Mount Vernon at the time, decided to bring their baby home with hospice care and love her as much as they could. They were surrounded by friends and family members who came over to spend time with Maci.

"We thought she’d pass away quickly, but each day, she got stronger and was eating better," Karissa told the Advocate in June 2016. "She was very weak, but each day we were home, she ate more and more and was awake more and more."

Maci wasn't ready to give up. Their family pediatrician, Dr. Brad Pfau of American Health Network Pediatrics in Newark, gave their family another option.

Pfau reached out to colleagues at Boston Children's Hospital, which is well known for its cardiology department, and sent them Maci's test results.

"Within 24 hours, they called me and said, 'I think I can fix her,' '' Pfau said at the time.

At 10 days old, Maci traveled to Boston with her parents for her first open-heart surgery, and “she ended up rocking it,” Josh Whisner later said.

Six months later, she survived another one.

Defying all odds, Maci learned to walk and talk. She picked up sign language and grew into a dynamic and lovable personality, one marked by spunk and laughter and determination.

When her health began to decline after a cardiac catheterization in October 2019, doctors told the Whisners there was little else they could do. Her pressures were too high to attempt a surgery; she was put on oxygen and a palliative care team came to their Heath home to help keep Maci comfortable.

Things were looking grim.

“There was a week or so where she just didn’t wake up,” Josh said in a December 2019 interview. “We actually felt like she was going. She was kind of at death’s doorstep once again.”

But Maci hung on.

After consulting with physicians in Cincinnati and Boston, the Whisners decided to attempt a surgery known as the Fontan Procedure, designed to redirect the blood flow in Maci’s body from her lower body to her lungs. 

They knew the risks. But it was their best shot at giving their little fighter another chance.

“We’re just kind of ready at this point, with Maci’s health declining, and we’re starting to see it slowly go downhill again,” Josh said prior to the surgery. “We understand that something needs to happen, and needs to happen soon.”

On Dec. 20, 2019, the family prepared to take Maci to Boston for her third open-heart surgery on Jan. 2, 2020.

Once again, Maci faced daunting odds; once again, she pulled through.

After a tenuous first couple days post-op, Maci’s body began to bounce back and the family returned home. 

Gradually Maci grew stronger and returned to her “old self,” gaining enough energy to run and play.

In July 2021, the family moved from their Heath home to a more rural property built specifically with Maci in mind — one with no stairs that would be easier for her to navigate.

She called it “the big house” and enjoyed being able to see from the couch everything the rest of the household was up to.

“She’s itching to live in the new house and keeps asking us when we can stay there. She cannot wait until that’s home and there are no more stairs and everything is accessible for her. No more help to get to and from her room,” Karissa wrote a couple months before the move.

As the COVID pandemic continued to rage through the county, the Whisners enjoyed quiet days as a family, laughing and playing, making the most of every small moment.

But as time passed, Maci’s new circulation slowly began to fail. She lacked the energy to get up and play or even get out of bed.

On Aug. 24 at 1:30 a.m., hours after meeting with a team of specialists familiar with Maci, Karissa Whisner posted an update for the more than 100,000 followers on Maci’s Facebook page, Maci’s Mended Heart:

“Today we heard the words that no parent wants to hear. My mama heart knew. But hearing the words still took my breath away. 

‘Maci’s circulation is failing, and she will not survive this.’”

The Whisners’ philosophy for Maci’s entire five years of life has been “quality over quantity.” They never wanted her to suffer, and at whatever point the suffering became too much, they vowed they would spare their little girl from prolonged pain.

“Her body has fought hard for five years, and we have had so many good times that we never thought we’d get to have,” Karissa wrote. “But the doctors think it would be the most compassionate thing to let her body rest now. Her body — from head to toe, is tired.”

In the weeks that followed, the post office box the family had set up for Maci became flooded with gifts from friends and strangers, both for Maci and her two siblings — older brother Jake and younger sister Everly.

Per Maci’s wish, the family bought a puppy, whom they named Olaf and who Maci instantly fell in love with.

With input from Maci, Josh had a few of her favorite characters tattooed onto his arms — Minnie Mouse, Peppa Pig and The Wiggles, among others.

All the while, hundreds of thousands of Maci fans followed along on her Facebook page. Locals organized events and fundraisers to help the family with the financial burden of end-of-life care. Students wore red for Maci at football games; Everly was invited to throw the first pitch at a baseball game.

The Whisner family felt the support.

"I also want to thank YOU all again. This is my therapy. Writing it all down,” Karissa wrote on Sept. 6. “Sometimes when the thoughts are too hard to say out loud, it helps to write them. And eventually, visiting those thoughts gets easier and easier. Eventually, I can say them and talk about them. 

“And I never, in a million years, could’ve imagined the support we’d have through this journey. I started writing on this page because it was a good mental “dump” each night, and helped me put those emotions out there and then rest better. Between the emotionally-fueled, irrational thoughts, and the horrible run-on sentences, I kind of hoped that no one would actually read it. 

But the support has been amazing. Josh and I feel like we have an extended family in all of you. So thank you so much, for helping us through this more than you probably know you are."

Even as she prepared for her daughter’s death, Karissa used the Maci’s Mended Heart Facebook page to reflect on the full life her daughter lived.

“She doesn’t know hate. I don’t think a single person has ever been mean to her. Isn’t that kind of cool to think about? She has never felt the pain of not being invited to the party, of being left out, of having her heart metaphorically broken. She literally has thousands and thousands of people who love her and would do just about anything for her,” she wrote on Sept. 13. “She is loved and accepted for *exactly* who she is. Is that not really what we all wish for in life? 

I’d like to think she has had a wonderful, full life.”