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'She's a warrior': Parents of Utica girl born with half a heart share journey

When a Utica girl was born in April, her parents never imagined the medical journey they would have to take to save her life.

When a Utica girl was born in April, her parents never imagined the medical journey they would have to take to save her life.

The Whisners are sharing their story to raise awareness about childhood heart defects.

“(It was at the) 20-week ultrasound that we found out about her heart,” mom Karissa Whisner said.

It was the kind of news that would break any parent’s heart.

“We were definitely heartbroken. I knew as a nurse looking at the screen, before they even said anything, that not all of her heart was there,” she said.

Maci Whisner was born with half a heart.

“I immediately started bawling and he didn't know yet,” Karissa said of her husband.

This 6-pound-8-ounce little girl had lived only a day when the doctors told her parents the news.

“They found several other cardiac defects,” she said.

Maci's life was coming to an end.

“When we came home, we were expecting hours maybe days,” dad John Whisner said.

Maci was diagnosed with Hypoplastic Left Heart Syndrome, a complex and rare defect leaving the heart’s left side critically underdeveloped.

“When we got the first diagnosis, we felt like the whole world crashed down,” Karissa said.

Doctors said half of Maci’s heart didn't develop.

“Typically within the first week these babies will pass away,” Karissa said.

One out of 4,500 babies are born with the defect, she said.

The odds, the Whisners thought, were against their daughter.

“It was when she was a day old that we brought her home on hospice for her to pass away,” her mom said.

So they posted the news on Facebook, hoping someone would see it and help their daughter.

That someone was a local nurse.

She told a local pediatrician who told Dr. Chris Baird at Boston Children's Hospital.

“It was overwhelming. We were in the car (within) 20 minutes driving to Boston,” John said.

“We went from planning her funeral to talking about her future,” Karissa said.

Dr. Baird happens to be one of the few cardiologists in the world that mends hearts like Maci's.

Maci underwent open heart surgery.

After 38 days of recovery, she was home and getting stronger.

“She's a warrior. She's the strongest little thing I’ve seen in my life,” John said.

This tiny fighter has two more surgeries to go, and even then there are no guarantees how long her heart will last.

“She's proven a lot of people wrong already,” John said.

The Whisners want other expecting parents to learn from their medical journey, and say they should ask to have their baby’s blood oxygen checked before leaving the hospital.

“So they can get a proper diagnosis instead of bringing them home, (where) their health would decline rapidly,” Karissa said.

For now, Maci’s heart still beats beyond what many predicted.

“We feel that we've witnessed a miracle,” Karissa said.

After what appeared to be a hopeless outcome, suddenly this family has hope.

“I think it's truly amazing to have her in our lives,” Karissa said.

The Whisner's say they would not have been able to travel down this medical journey without the help of the people who donated money, held bake sales and sold T-shirts to support them.