‘She fought her hardest’: Lincoln family devastated after baby dies from heart defect

LINCOLN, Neb. (KLKN) – Brezee Barr-Johnson was 9 months and 1 day old when she died from a congenital heart disease on Monday.

The Lincoln baby was diagnosed with total anomalous pulmonary venous return, or TAP-VR for short, which means her veins weren’t connecting properly to carry oxygenated blood from her lungs to her heart.

She had multiple open-heart surgeries and spent much of her short life in Children’s Nebraska hospital in Omaha.

In February, Channel 8 highlighted her return home. And for the next few months, her mom said she was doing well.

SEE MORE: Lincoln baby’s battle with heart defect brought her to brink of death

But this past Sunday, her heart stopped.

“Everything was fine until Sunday,” said Jaycee Barr, Brezee’s mother. “She started declining, and at 6:45, I had to do CPR on her while on the phone with dispatch until EMTs arrived.”

Brezee was flown to Omaha, where doctors performed CPR multiple times over the course of 24 hours.

But at 7:05 a.m. Monday, Brezee died.

Jaycee said this has been devastating for their family.

“It’s heartbreaking and rough, but we push through for her,” she said. “She fought her hardest, and you could tell that she’s just not ready to give up, but her body was just done. It couldn’t fight any more.”

Jaycee wants to raise awareness about congenital heart disease, which affects one in every 100 babies born in the U.S.

“I had no idea about CHD until I had her,” she said. “Just because a baby has a CHD doesn’t make them any more different than a regular baby. They may struggle, but they will fight.”

Brezee was a fighter, but that’s just one thing her mom will miss about her.

Jaycee said Brezee changed her life for the better.

“She actually brought the light to everybody’s lives the past nine months,” she said. “Her smile, her giggling. If you were having a bad day, if you just looked at her, she would just make you happy.”