JACKSON, N.J. – Just 28 weeks into her pregnancy, Cathy Kern received the news that would shape the rest of her life.
Doctors told Kern that the baby growing inside her would be born with a life-threatening heart defect, a rare condition called hypoplastic right heart – or as Kern describes it, “half a heart.”
Few people who meet Kern’s daughter Isabella “Bella” Georgiano today would have any idea the 12-year-old girl functions with just half her heart.
The strawberry blond sixth-grader at Jackson’s (N.J.) McAuliffe Middle School practiced with her cheerleading squad on a recent Wednesday evening before joining her teammates for ice cream. She ran outside with the red-shirted girls after the practice with exuberance that belied her condition.
“I can get out of breath a lot just going up the stairs, and doing a lot,” she admitted.
One hint of Bella’s complex medical condition is her soft, hoarse voice. She has a paralyzed vocal cord as a result of one of her surgeries, Kern said.
Privately, Bella’s life is more complicated. She takes daily medication for her hearth rhythm and to prevent blood clots, and has asthma inhalers because her condition has impacted her lungs. On a cheerleading trip to Florida, she did not want her classmates to see her on the plane with oxygen, her mother said.
Yet, in many ways, Bella is a typical 12-year-old. She has friends and a social life that revolves around sports.
“I’m gonna do softball and then tumbling,” she said after practice in the Jackson Jaguars Youth Football and Cheer gym off Manhattan Street.
Underneath Bella’s seeming normalcy, her condition is serious. She had a stroke as an infant and stopped breathing when she was just three months old, her mother said. She developed a life-threatening pleural effusion, or buildup of fluid in the chest cavity, after one heart surgery became infected, Kern said.
Just last year, Bella missed nearly 100 days of school. When she catches a cold, it can last weeks, her mother said.
Dr. Elsa Castro, a pediatric cardiologist at Alpert, Zales and Castro Pediatric Cardiology in Brick and Red Bank, said the right side of Bella’s heart failed to fully develop during Kern’s pregnancy. A problem with the girl’s heart valves caused a distortion in blood flow in her growing heart, and as a result, the right ventricle never fully formed.
To save Bella’s life, surgeons have rerouted the veins in her body through several procedures.
In a typical body, these veins bring blood back to the heart’s right ventricle before blood is pumped to the lungs. In Bella’s case, surgeons rerouted her veins to take blood straight to her lungs, and from there to her heart’s left ventricle, which pumps the blood to the rest of Bella’s body, Castro said.
“These people have never survived before,” Castro said. “We’re learning more about this every day… This is the first time that kids are really going to make it.”
There are still major obstacles. These congenital heart defects can happen alongside major organ and system failures, and Castro. Doctors are still studying why, she said.
According to the hospital, they are still at risk for serious health conditions, like strokes, liver abnormalities, bronchitis, and other conditions.
“Only by doing the research and studying these children who have survived can we make a clear and better path for the children who come after them,” said Castro.
Comedian Jimmy Kimmel recently brought national attention to congenital heart defects with a tearful monologue on his late night talk show about his infant son’s heart surgery.
Congenital heart defects are the most common type of birth defects, affecting one out of 125 newborns, or more than 35,000 babies born each year in the United States, according to the National Institutes of Health.
Bella’s condition is more rare; about 3,000 babies are born each year with complex single ventricle heart defects, according to Children’s Hospital of Philadelphia.
To help researchers, Kern is active in the Big Hearts to Little Hearts foundation, a Spring Lake-based organization that raises money for congenital heart defect research. The group also purchases automated external defibrillators for local schools; the devices give an electronic shock intended to restore normal heart beats during sudden cardiac arrest.
“The only way I’m going to make sure that she (Bella) lives into adulthood, is I have to say I did every single thing that I can, I could,” said Kern. “She is doing absolutely every single thing that she can, for sure.”