LOUISVILLE, Ky. -Isla Brown is celebrating her first birthday at home after spending her entire life in a hospital.
“We’ve been here 357 days, we’ve hit every holiday here, she has started eating baby food here, rolling over, gaining head control, she’s doing everything a normal baby would do just in a hospital setting,” said Isla’s dad Christian Brown.
Isla was born with hypoplastic right heart syndrome.
“You’re born with two valves in the heart, one is the mitral valve, one is the tricuspid valve and she was not born with the tricuspid valve,” said Isla’s mom Hailey Brown.
She also had CHARGE syndrome, which is a rare disorder that starts during early fetal development and affects multiple organs.
“It’s a huge amount of stress. you wake up every day and her care could be different that day so you’re kind of living in a world where everything is up in the air constantly. The only consistent thing is we’re gonna come here, love her and give her the care she needs to grow,” said Christian.
After months of care, her doctors realized nothing was working to reverse her condition. She was put on the heart transplant list.
“They did plenty of things to stop that leak but nothing was working so they had to move on to the transplant. It’s just like trading one diagnosis for another,” said Christian.
After being put on the heart transplant list in August, she received her new heart on January 13th.
“She was one of the more dramatic patients that I’ve seen looking so well after her transplant, her color was better, she wasn’t so swollen, she was more active, less agitated, everything about her was different,” said Norton Children’s Heart Institute Dr. Nicole Lambert.
Now she’s headed home for her first birthday party. What a great present!
