The day before her fourth birthday, Rissa was happily opening presents during her birthday party as her dad, Peter, took pictures with his phone. That’s when he got an unexpected call that brought news of the best gift that he and Rissa’s mom, Ashley, ever could have asked for: a new heart for Rissa.
When she was born in January 2016, Rissa was diagnosed with hypoplastic left heart syndrome (HLHS), a serious heart defect in which the left side of the heart is underdeveloped and struggles to pump blood to the body. Without immediate intervention, it is fatal.
At 8 hours old, Rissa was medevacked to Phoenix Children’s. As Ashley recovered from the C-section birth, Peter met with Phoenix Children’s pediatric cardiologist Dr. Erik Ellsworth, who explained Rissa’s condition and the options for treatment. Ellsworth told him that treating HLHS involves a series of three surgeries, with the first one—the Norwood procedure—performed within two weeks after birth. It’s considered one of the riskiest pediatric heart surgeries.
Rissa’s Norwood procedure took place when she was less than a week old, and it was a success. Once at home with a feeding tube in place, Ashley texted Rissa’s heart rate, oxygen level and weight to the doctor every morning so they could make feeding adjustments to ensure she would be ready for her next surgery at 5 months old.
The second surgery was also a success, and Rissa went home—again with a feeding tube. At 9 months, she began eating on her own and was progressing well. Yet in May 2019, as they prepared for the final surgery to repair her heart, Rissa suffered a devastating setback: the doctors discovered her pulmonary artery wasn’t functioning. In August, a procedure to correct it failed, and the only option left was a heart transplant.
“During that time, her stamina and energy levels were low, and it was taking a toll on her, which is definitely not normal for a 3-and-a-half-year-old,” Ashley says.
A life-saving gift
Jump to January 2020 when Peter’s phone rang during Rissa’s birthday party. It was the news they had been waiting for. The next day, on her fourth birthday, Rissa received a new heart.
Over the following three weeks, Rissa gained strength and roamed the halls of Phoenix Children’s to visit hospitalized babies, telling them, “Be brave.” She was released from the hospital three weeks after her surgery, and because she was immunocompromised, she and her family were quarantined. Shortly after, COVID-19 seemed to present yet another challenge, but according to Ashley and Peter, it was a blessing in disguise.
“After the surgery, Rissa was in lockdown, and then when COVID hit the whole world was in lockdown with her,” Ashley says. “Her preschool was virtual, her kids’ church group was virtual, so she didn’t miss out on anything.”
Still, there have been many challenges as Rissa has adjusted to life with her new heart. She must take numerous medications, something that’s been hard on both her and her mother. But over time, things have become easier.
“We are grateful to the team at Phoenix Children’s. Rissa is thriving now, and her team has given us the tools to help her continue to progress.”Peter, Rissa’s Dad
“I remember sitting there almost in tears, telling her, ‘Baby, you have to take this medicine.’ Today, she takes her handful of pills and moves on,” Ashley says.
A year and a half after her transplant, the future looks bright for Rissa. “We are grateful to the team at Phoenix Children’s,” Peter says. “Rissa is thriving now, and her team has given us the tools to help her continue to progress.”
One out of every 100 children is born with a heart defect. That means 15,000 of the 1.5 million children living in Arizona may need complex cardiovascular care, and possibly a heart transplant. Now is the time to invest in Phoenix Children’s Heart Center, for Arizona’s children, and for families like Rissa’s, everywhere.