NASHVILLE, Tenn. (WTVF) — Since the moment Henry Smith was welcomed into the world, Monroe Carell Jr. Children's Hospital at Vanderbilt has been his home.
"He’s a spitfire," said Taylor Smith, Henry's dad.
But even though he's constantly wrapped in cables and tubes and surrounded by noisy machines, you can still tell, Henry has a lot of heart. Even if the one he was born with doesn't work perfectly.
"His left ventricle was too small to really work the way it was supposed to. His aortic arch was too small to really work the way it’s supposed to," said Smith.
Specifically, Henry has an atrioventricular septal defect with a hypoplastic arch and left ventricle. That's been tough for his father Taylor and mother Aubrey.
"It’s just been a rollercoaster of ups and downs. He’s had three heart procedures since then, trying to make it work with the plumbing he’s got," said Taylor.
A few weeks ago, the family learned instead of being able to fix his heart, he'd need a whole new one.
"It’s weird what a 10-month hospital stay will do to shift your perspective," said Smith.
Months ago, news of a transplant might have overwhelmed Taylor, but at this point, it almost came as welcome news.
"It’s gotten to the point where — whatever we need to do, we just want to take him home," he said.
But being on the transplant list brings its own version of an emotional rollercoaster.
"Your adrenalin shoots through the roof because you don’t know if it’s a bad phone call. You don’t know if it’s the transplant phone call, and you don’t know if it’s some telemarketer saying that you need to sign up for Medicaid because some elderly person gave them the wrong phone number," said Smith.
When that call comes, Taylor and Aubrey want to be ready. So they're raising money for the Children's Organ Transplant Association, or COTA, in honor of Henry. Those funds will help them spend even more time at his side.
"It’s been humbling, staggering; the amount of support we’ve had from family, friends, strangers… complete strangers," said Smith.
He hopes one day, hopefully soon, Henry can know what it's like to truly have a place to call home.
"I just want to sit and stare at him in my house. To tell you that I have daydreamed so many times about my son just sitting in his home is stupid. Stupid how often I think about that. God, I can’t wait. I can’t wait for all of it," said Smith.
If you'd like to donate in honor of Henry, click here.
