Pediatric heart transplant patient finally home after first year of life in a Louisville NICU

LOUISVILLE, Ky. (WDRB) — A 1-year-old girl is finally home from the hospital after receiving a life-changing heart transplant.

Isla Brown has spent all but five days of her life at Norton Children’s Hospital due to a severe heart defect.

According to a news release from the hospital, doctors discovered the condition before Isla’s birth. Doctors said she had hypoplastic right heart syndrome, a congenital heart defect in which the right side of the heart is underdeveloped. In severe cases, the condition can lead to heart failure.

She was also diagnosed with CHARGE syndrome, a very rare disorder that shows up during fetal development and affects multiple organ systems.

Hailey Brown, Isla’s mother, said she gave birth to her at 37 weeks and three days — and she wasn’t breathing on her own when she came out.

“It was a scary situation,” she said in an interview recorded by Norton Healthcare. “She was immediately intubated when she was born, and they just took her to the NICU. I really didn’t get to see her other than to touch her hands for two seconds.”

From that point on, Isla’s father, Christian Brown, said they were were surrounded by doctors, nurses and other supporters. He said Isla literally lived in the hospital for the first year of her life.

“We’ve been here 357 days,” he said in an interview recorded by Norton Healthcare. “We’ve hit every holiday here. She has started eating baby food here, she has started rolling over here, gaining head control – everything a normal baby would do in that first year, she’s doing, just in a hospital setting. With lots of fans, because it’s a hospital setting.”

“We’ve received so much support,” Hailey Brown agreed. “We are not really the people to reach out, but when we did … they reciprocated. The doctors at Norton Children’s Hospital are amazing. Each and every one of them, yes, they’re doctors, but they talk to you more on a personal level too, to make sure, like, ‘You’re okay. You got this.’ Reassure us that Isla is very strong. Kept us going. Our parents were amazing.”

That said, Hailey Brown admitted that the first year has been challenging.

“I wasn’t able to make life decisions for her, even though I’m in control of her care, it’s difficult,” she said. “I couldn’t give her her first bath. I wasn’t able to do test chest. It’s very difficult. It’s very different. It’s far from normal. It’s really tough.”

But all of that was about to change. As a result of her condition, Isla was put on the heart transplant list in August. She received her new heart Jan. 13, 2023.

Christian Brown recalled listening to his daughter’s new heart for the first time.

“Gosh, I didn’t have words for when it happened and I barely have words now,” he said. “It’s more of a feeling. It’s that warm feeling that you get all over your body because you know that she did it. She’s got this strong heart, and it’s beating. All four chambers are working perfectly. It’s really hard to describe in words exactly how you feel, but it’s amazing.”

Dr. Nicole Lambert, Norton Healthcare pediatric cardiologist who focuses on heart failure and transplants, said Isla Brown underwent one of the most remarkable improvements she’d ever witnessed.

“I mean, you walked in and you looked at her, and she looked like a different baby,” she said in an interview recorded by Norton Healthcare. “Her color was better. She wasn’t so swollen. She was more active. She was less agitated – just everything about her was different.”

That’s when Hailey Brown said the doctors started talking about — finally — being able to send little Isla home.

“It’s unreal,” Hailey said. “She had her transplant and the doctors come in and said, ‘It will probably be a couple of weeks from now.’ And it was strange because we really didn’t even think about going home afterwards because we’re just so used to being here.”

Isla went home on Thursday, as several of the Norton Healthcare staff celebrated.

Hailey Brown said it’s the day she’s been waiting for since Isla was born.

“We’re so excited,” she said. “I can’t wait to just take her outside and just breathe fresh air and just let her be a baby,” adding that, “I just hope she thrives and she lives a happy life doing whatever she wants to do.”

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