Bra'laya's story: The gift of life

Bra’laya was just six months old when her pediatrician noticed that her eyes showed she was jaundice, a condition in which the skin, whites of the eyes, and mucous membranes turn yellow. It can be a sign of a serious medical illness, so her pediatrician referred her to Children’s Hospital New Orleans.

Kimberly, Bra’laya’s mom, remembers not being scared by this referral and trusting the doctors at Children’s Hospital. The care team decided to perform a procedure on Bra’laya, but when she arrived for the procedure, everything was back to normal, and they no longer needed to operate. Kimberly said, “All I remember is that I got to take my baby home.”

Although they went home, Kimberly and the care team at Children’s Hospital always kept their eyes on Bra’laya. At about five years old, the care team did an ultrasound on Bra’laya and performed a biopsy. The biopsy results came back, and Bra’laya was diagnosed with Alpha-1 antitrypsin deficiency (AAT deficiency), an inherited condition that raises the risk for lung and liver disease.

Dr. Patricio Arias, Director of Pediatric Hepatology and Medical Director of the Liver Transplant Program at Children’s Hospital New Orleans, spoke with Kimberly to explain the diagnosis and their care plan moving forward. At the time, Bra’laya would need to be constantly monitored for changes in her health, but Dr. Arias predicted that she would need a liver transplant around the age of nine or ten.

Remembering the diagnosis and hearing her daughter would need a liver transplant, Kimberly said, “I’m not going to say I was scared, but kind of worried. I didn’t know how the recovery would be. Bra’laya is a very strong child. She doesn’t complain about pain. Just me being a mother, my worry was the outcome.”

At nine years old, Bra’laya was placed on the liver transplant list in August of 2021. She was always being monitored by the Children’s Hospital care team and in 2021 she had to stay in the hospital several times for extended periods of time. Her body was retaining fluid and she needed medicine through an IV to reduce her fluid retention.

During one of her hospital stays, Dr. Arias and Bra’laya’s care team came into her room because they received the call that there was finally a liver ready for her.

Recalling the moment, Kimberly said, “It was all of the emotions at one time. I was very excited and thankful that they had found a liver, but then I was like okay she has to get through this major organ surgery at nine years old.”

One of the doctors called Kimberly into the hallway and told her Bra’laya’s liver is one of the worst livers he’s seen in all his years. He shared with her that if Bra’laya hadn’t received that liver right then, she may not be here today.

The next morning the care team at Children’s Hospital began prepping Bra’laya for her surgery. They brought her to the surgery prep room and Bra’laya told her mom, aunt, and family friend in the room that she had a dream that she had already had her surgery. In her dream, she had an upside-down rainbow scar on her stomach from the transplant. She told them she was no longer afraid of the surgery because in the dream she was at home.

Less than 24 hours after receiving news a liver was found for Bra’laya, she was wheeled into the operating room that afternoon for her liver transplant. “I don’t think I processed any emotions until we were home,” Kimberly said laughing.

Bra’laya’s surgery was nine about hours. “We waited. They kept calling every couple of hours to give us updates. It was just a waiting game. I was there waiting for the outcome...was it good, was it bad,” said Kimberly.

After her surgery was complete, Bra’laya’s family went to her room to see her. They expected her to be sleeping after the major surgery, but Kimberly remembers seeing Bra’laya with her eyes wide open and she was being her usual silly self.

The doctor began to walk Kimberly through how the surgery went and reached down to point out Bra’laya’s scar. Kimberly recalled that neither Bra’laya or herself knew what the scar would actually look like following the surgery, despite Bra’laya’s dream. And sure enough, Bra’laya’s scar was an upside-down rainbow. “I was like oh my gosh! Okay God, I see what you’re doing,” exclaimed Kimberly.

Bra’laya had an amazing recovery process, relieving many worries that Kimberly had before the surgery. Although Bra’laya was supposed to be in the ICU for two weeks, she was able to move to a regular floor in just one week. They remained at the hospital for about four and a half weeks and were able to go straight home to Franklin, Louisiana instead of staying near the hospital because of how well Bra’laya was recovering.

Following her surgery, Bra’laya had several checkups at Children’s Hospital. Her progress was so incredible without complications that they were able to spread her appointments out to once a month. Although the doctors are caring for many children, Kimberly remembers being cared for and listened to with the care team’s full attention.

Reflecting on her experience at Children’s Hospital, Kimberly said, “I do have a lot of trust in them. They did their job very well. In the beginning, when we were first diagnosed, Dr. Arias told me ‘We are going to monitor her, and she was going to need this.’ He predicted it right, that she would need a transplant at nine years old. I never looked into anything else.”

Kimberly spoke fondly of their care team saying, “The care team went above and beyond. I have an amazing support system, but not everyone does. The hospital and care team did everything they possibly could to make sure I was okay as well. It was about Bra’laya, but they also made sure I was okay and was in the right state of mind. That right there makes a difference, especially for the people who don’t have that support. Them taking that initiative to make sure the parents are okay really makes a difference.”

Months after her surgery, Bra’laya was back to just being a kid. She was excited to get back in the pool and take swimming lessons again. Following the surgery, she was back playing basketball and dancing as soon as she was able.

Bra'laya recently celebrated the one-year anniversary of her liver transplant and told everyone about her “yearaversary.” Kimberly said, “Bra’laya is aware of this blessing she has received.” Her family celebrated with her favorite meal, seafood and sushi!

After celebrating her one year mark from recieving her liver trasplant, Bra'laya caught a viral infection that caused her body to reject her kidney. She was hopsitalized and provided what Kimberly said was great care and medication for two weeks. Her care team nursed her back to health and she was back dancing and playing basketball within two weeks. 

Bra'laya's story is an incredible reminder of the importance of organ donation. Because of Bra'laya's organ donor, she was blessed with the gift of life and being a kid again. In honor of National Organ Donor Day, consider registering for kids like Bra'laya to be an organ donor.