Tamika LeBlanc was 21 weeks pregnant with her first child when someone from her doctor’s office in Garden Grove, California, called. They wanted her to have another ultrasound.
“We didn’t get a great picture of the heart,” she’d been told, prompting LeBlanc to think she was headed in for routine imaging.
The ultrasound tech snapped photo after photo. It took longer than her first visit. As it dragged on, LeBlanc began to worry. Then the doctor came in to explain what the pictures showed.
Her unborn baby had heterotaxy syndrome, a rare condition marked by abnormal arrangement of organs. Congenital heart defects are the most common type of birth defect in children and often affect babies with heterotaxy syndrome. LeBlanc’s baby had an underdeveloped heart with one ventricle and one atrium, so the defect meant her heart had two instead of four chambers.
Two days later, she went to see Dr. Nita Doshi, the medical director of fetal cardiology at the Children’s Hospital of Orange County to learn more about her daughter’s prognosis.
Doshi explained that there would be no way to fully repair the child’s heart. Their best option involved at least three surgeries in her first few years. However, even then, the girl may not live past her fifth birthday. LeBlanc left knowing the odds were long, but Doshi also left her feeling optimistic that her daughter could beat those odds.
When Olivia Gail LeBlanc was born on Aug. 23, 2017, Tamika held her daughter for a few seconds before she was taken for evaluation by pediatric cardiologists. Olivia underwent her first open-heart surgery at 18 days old.
Olivia had her second open-heart surgery when she was 5 months old.
The best-case scenario was for Olivia to wait until she was 4 to 6 for her third open-heart surgery. But in April 2019 – at age 2 1/2 – she went into heart failure.
Her problems were so severe that she wasn’t a candidate for the third planned surgery. Doshi had Olivia evaluated for a heart transplant. While she was waiting for a heart to become available, Olivia’s heart stopped. She was in cardiac arrest. Doctors performed chest compressions for 45 minutes, then used a heart-lung machine to keep her alive.
Getting on a transplant list can be tricky because a patient has to be sick enough to need a new organ yet healthy enough that they’ll likely thrive once they receive it. Olivia’s health yo-yoed, causing her to go on and off the list starting Nov. 22, 2019.
She received a new heart on Jan. 26, 2020.
Olivia had to learn how to walk and eat again. She’s had other challenges, such as a vocal cord getting paralyzed during one of her intubations.
“A heart transplantation is not a cure. It is a different and equally involved heart condition and complex journey,” Doshi said. “Olivia is a true heart warrior and continues to inspire us with her strength, perseverance and courage.”
Now approaching her 7th birthday, Olivia “has so much energy and just doesn’t stop,” Tamika said. Olivia takes horseback riding lessons, dance lessons and is learning to cook.
“We say she has a supercharged heart,” Tamika said.
The family started a nonprofit, the OG Life, named for Olivia Gail, aimed at helping families whose children are dealing with life-threatening heart conditions. This year, Olivia is serving as an American Heart Association national Heart Walk ambassador.
“It’s important to tell Olivia’s story to give families hope,” Tamika said. “In five years, I want to tell you that Olivia is still running around with her supercharged heart and there is more light being shed on heart defects and we’ve discovered new treatments to help our kids live longer.”
Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.
