They're the words no parent ever wants to hear -- "your child needs a heart transplant.” What do you do? How do you overcome this unthinkable obstacle now lying in front of you?
"Rohen was originally diagnosed in utero, so when I was pregnant around 20 weeks,” says Amanda Reeves.
Amanda Reeves and her husband Chris received the news no parent ever wants to hear.
"Hypoplastic Right Heart syndrome is where the right ventricle of the heart is underdeveloped, or sometimes isn't even there. So it's basically a 3 chamber heart,” says Reeves.
"It was definitely challenging, just, we just put our best foot forward, you know, and just roll with the punches,” says Chris Reeves.
It meant he'd eventually need a heart transplant.
"It was so scary. Honestly, you don't really know in the beginning, you don't know what it all entails,” says Amanda Reeves.
Once born, Rohen would be in for a challenging road ahead of him, but there was already good news -- in a 3-surgery series, Rohen was healthy enough to skip the first surgery, and stayed home until he was 10 months old.
"Then he went up for his Glenn, which was the 2nd of the 3 surgeries, and that's where everything kinda fell apart,” says Amanda Reeves.
Rohen's lungs weren't doing well after the surgery and he was placed on extracorporeal membrane oxygenation, or ECMO -- a form of life support -- for 23 days. His chances for survival were slim.
"At that hospital, there had never been a child that came out of the operating room, from the Glenn procedure, on ECMO, that ever came off of ECMO and lived,” says Amanda Reeves.
The only procedure doctors offered until a heart transplant was available -- a Berlin heart pump -- didn't offer a good chance of survival either -- only about 40 percent.
"Typically in the normal world, he wouldn't be alive. So then you have a child that ordinarily wouldn't be alive anyway, and then you're talking about the odds on top of odds,” says Amanda Reeves.
It should have been a 4 to 6 hour Berlin heart surgery…
"So it took 11 and a half hours, and his lungs tanked again in the O.R., and he came out on ECMO and the Berlin,” says Amanda Reeves.
The cardiologist called it a failed procedure and told the Reeves that Rohen probably was not coming out of the operating room.
"I was bawling and I just kept saying, I'm not leaving without my son. I'm not leaving without my son. And I told her, you need to go back in there and tell them I'm not leaving without my son, so make it work,” says Amanda Reeves, "I just kept praying, if he's going to pass away, I want them to come in right now, I want them to come in right this second and tell me that this is it. And then they never did."
The next day, Rohen came off of ecmo life support -- a week later he was sitting up in a chair.
"It was so weird,” says Amanda Reeves.
That's the power of prayer. And, after 14 months of waiting, shortly before his 2nd birthday, Rohen got his heart.
"It's a happy moment but at the same time sad for the donor family who has to lose their child in order for us to have our son here,” says Chris Reeves.
The entire ordeal has left the Reeves family with a new appreciation for organ donation.
"24 hours ago I said I could never donate my son's organs, and then the next day, I'm waiting for somebody to donate their son's organs,” says Amanda Reeves.
Rohen is now thriving and rambunctious, with only some minor bumps in the road since receiving his new heart.
"He likes to show off and make people laugh and everything like that, so he's definitely like my little mini me hero,” says Chris Reeves.
Rohen will need another heart transplant at some point in the future. His mom says as long as he does well, he will likely live a very normal life.