The Heart of a Warrior

January 2, 2019

Teen perseveres despite a cardiac condition with lifelong support from her doctor.

Although 16-year-old Arianna didn’t know it at the time, she began what would be a lifelong relationship with her cardiologist before she took her first breath. Arianna was diagnosed in utero with a rare form of a rare heart defect. She had what’s called Ebstein’s anomaly — a defect in which the leaflets of the tricuspid valve are congenitally malformed — with the additional complication of inadequate valve tissue. Doctors diagnosed the condition during a routine ultrasound, which led them to further testing. This form of heart disease causes blood to leak backward, slowly enlarging the heart and preventing it from working efficiently. The condition requires close monitoring and, eventually, open heart surgery.

While pregnant, Arianna’s mother, Maria, met Robert Tozzi, M.D., chief of Pediatric Cardiology at Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center, who assessed her condition and monitored her baby’s health.

“We saw Dr. Tozzi regularly — sometimes monthly — after Arianna was born to ensure her heart was functioning adequately,” recalls Maria.

“Growing up, we let Arianna live life like any other kid. In fact, Dr. Tozzi encouraged us not to treat her differently because of her condition. He explained that Arianna could do what every other kid could do except that her body had to work harder to do those same things. Arianna never lets her condition stop her. She has always been very athletic and active despite it — dancing and playing soccer, softball, basketball, volleyball and now tennis.”

TRUSTED ADVISER

When Arianna’s heart began to enlarge severely around age 12, Dr. Tozzi counseled her to eat better and become more active. “Arianna worked to get the best from her body. She literally and figuratively ran with it. This focus on health allowed us to wait until her growth and development were ideal,” explains Dr. Tozzi. “This window of opportunity gave her the best chance for an excellent long-term outcome.” Arianna’s focus on her health continued through her early teen years, allowing her to excel on her varsity high school tennis team. But as expected, the effects of Ebstein’s anomaly began to catch up with her. Fortunately, her determination never wavered.

After years of careful monitoring, Dr. Tozzi determined that Arianna, then age 15, could no longer wait for surgical treatment. “Treatment of Ebstein’s anomaly is a balancing act,” he explains. “Without treatment, the condition can cause irreparable harm to the heart, resulting in life threatening heart failure and rhythm problems. However, if the valve is replaced too early, it can become damaged by calcification that occurs during normal bone growth. This calcification would lead to a rapid deterioration in valve function. As a result, timing is everything.”

Arianna underwent open heart surgery to correct her heart disease. The surgeon replaced her valve with a prosthetic valve, surgically reduced the size of her heart and unexpectedly implanted a pacemaker to keep her heart in rhythm.

FORGING AHEAD

Overcoming the surgery and learning to live with a pacemaker wasn’t easy. But Arianna tackled it head on. “After surgery Arianna told me, ‘Mom, I’m going to beat this,’ and she just forged ahead,” says Maria. “She’s our warrior.”

Today, almost one year after surgery, Arianna continues to recover, regularly checking in with Dr. Tozzi, who monitors her heart and valve function and tracks her progress. Arianna is not only back to playing tennis, but she bikes, hikes and lifts weights. “Arianna is a truly remarkable child. Her strength and resilience are amazing and I’m blessed to have her as a lifelong patient,” says Dr. Tozzi. “We can’t take away Arianna’s heart condition, but we’ll work together to help her reach her goals.” Maria adds, “Dr. Tozzi is the most amazing individual; we trust him completely. He was born to do what he does, and I thank God every day for him. We are so thankful to have this team of doctors behind us.”

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LIFE-CHANGING CARE

Learn how our renowned pediatric heart doctors provide the latest treatments for children at HackensackMeridianHealth.org/PediatricCardiology.