Alabama infant needs heart transplant

MORGAN COUNTY, Ala. (WHNT) — Two parents from Morgan County have spent every day of their daughter’s life by her side in a Birmingham hospital.

It’s been seven long months, but they say they will stay until their daughter can get a heart transplant.

McKayla Raper said that the family’s stay at Children’s of Alabama started when her daughter, Ivey, was born on October 10, 2024.

“She’s a real miracle, she really wasn’t supposed to be here right now,” McKayla told News 19.

Her husband and Ivey’s father, Chris, said he gives a lot of credit to the team of doctors and nurses at Children’s.

“When she was born, they did scans on her and realized she was a lot sicker than what they thought she was,” McKayla said.

When McKayla was pregnant, they quickly learned that Ivey had Heterotaxy Syndrome. It’s a rare condition where organs are formed abnormally or are in the wrong position. Ivey’s parents said in addition to that, she was born with a congenital heart defect.

Right now, Ivey is supported by a Ventricular Assistive Device (VAD). However, she really needs a heart transplant.

McKayla said doctors “ultimately decided she would need a heart transplant to survive.”

Ivey has been on the waiting list for a new heart since November 20. Her dad, Chris, said that Ivey has maintained good health since then and hasn’t had to be removed from that list.

The couple remains hopeful that their daughter will get a transplant soon.

“They say any day now, so we’ll see,” McKayla said.

However, it’s already been a long journey for the family. In addition to having spent more than 200 days away from their home in North Alabama, they’ve had to make other sacrifices to be close to the hospital.

“I was a nurse at Huntsville Hospital, but I quit my job so that I could stay down here with her full time,” McKayla said. “I mean it’s hard, but there’s no place I’d rather be than with her.”

Chris said he changed jobs during the ordeal and now works remotely, so he’s able to stay by Ivey’s side in the hospital.

The family said they feel lucky to have a great support system of family and friends, however, there are some ways that the community can rally behind them.

“Anything at all is helpful,” Chris said. “We’re not going to sit here and ask for money or this or that. If you could just say a good thought or prayer, that’s the main thing.”

“If you feel inclined to send something, we do have t-shirts that we just recently launched for a fundraiser,” Chris said.

The t-shirt design brings awareness to Congenital Heart Defects and Ivey’s story while raising money for the family.

Chris said they also have a GoFundMe set up. However, he made it clear that they are “not in any way asking for anything.”

The Rapers said they couldn’t ask for a better care team for Ivey at Children’s while she waits on her heart transplant.

“The nurses and the doctors here are great and they love Ivey,” McKayla said. “They take good care of her.”

The Rapers said they aren’t sure how long it will take to get a transplant scheduled. Due to Ivey’s age, there aren’t as many available donors. However, they do say that she is near the top of the list.