MUSKEGON, Mich. (WZZM) - She's 15-months old, the apple of her parent's eye and she has a broken heart.
"It's really hard to grasp the reality of the situation," said Sofi's mom, Kristyn. "She is in heart failure, because she doesn't let you know it."
Sofi's mom and dad found out that she had a congenital heart defect before she was even born. At 18-weeks, a sonogram diagnosed Sofi with hypoplastic left heart syndrome (HLHS).
Arrangements were made for Kristyn LaPres of Muskegon to deliver her daughter Sofi at Mott Children's Hospital at the University of Michigan. "We were happy to know that they have a plan in place for babies that are born with this," said Kristyn.
That plan also included three surgeries. The first one came just six days after she was born, the second at four months. The third one never happened because Sofie's aorta started to close.
Dr. Richard Ohye is Sofi's pediatric cardiac surgeon at the University of Michigan. "The easiest way to think about it is she's essentially born with half a heart," explained the doctor.
Dr. Ohye says Sofi's left ventricle doesn't pump any blood to her body and her right one is beginning to fail. "Right now she's doing okay. She's on some medications. That is helping her heart to do a little bit better, but it's not a heart that's going to last her a lifetime."
The average wait for someone her age is about three months. Dr. Ohye and Sofi's parents remain hopeful a heart will come in time to save Sofi's life, but her mom and dad are also preparing for another outcome.
"We don't really know how this is going to turn out, if she's going to be waiting and never get a heart, or if she'll get one fast and everything will be okay. You know, sometimes, babies they wait, and they don't make it. Knowing that we may leave here without her - that's really hard."
But Kristyn knows there's an equally hard part to this story. "It's definitely sad, but she can only live, if someone else dies."
It's the reality of organ donation. Will there be a heart for Sofi or will Sofi give the gift of life to someone else's child?
We will continue to follow Sofi's story as she waits for a heart transplant.
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