|Mended Little Hearts: Area Group Meets at ACH To Share Support, Insight and Hope|
Their baby was only two days old when Jamie and Rodney Masengale received the shocking diagnosis: little Olivia had been born with a rare and serious congenital heart defect called truncus arteriosus, meaning that only a single blood vessel came out of her left and right ventricles instead of the normal two.
Though she had been carried full-term, Olivia weighed only three pounds, nine ounces when she was born in January 2006 at a Bradenton area hospital. An echocardiogram revealed the "problem with her plumbing," as Jamie calls it, and she was immediately rushed to All Children's Hospital. Babies born with the condition typically undergo surgery promptly but Olivia was too tiny, adding to her parents' state of distress.
But shortly after the diagnosis, an All Children's nurse practitioner on Olivia's team gave the Masengales a flier about Mended Little Hearts, a national organization devoted to supporting parents of children born with myriad heart issues. Mended Little Hearts had just started a branch in St. Petersburg and its next meeting would be held a week later.
"Rodney and I were like, 'We're there,' " Jamie recalls. "We had to wait a whole week, but we wanted to be there right away. I remember that it was a big meeting, and representative from the national organization was there. But what really made an impact was seeing older kids there with heart defects, running around and being normal. We were still so confused about everything, and wondered if our baby was going to die. That's why the meeting was so wonderful. It helped ease our minds. And we've been going ever since."
Olivia would benefit from ACH's outstanding heart surgery program, undergoing a successful operation performed by James Quintessenza, M.D. at six weeks, and then began to see pediatric cardiologist Gul Dadlani, M.D. She was eventually diagnosed with a genetic condition called DiGeorge syndrome, which carries a high incidence of congenital heart problems. But Olivia has continued to thrive and today, at age 8, is an active, happy second-grader.
Jamie, meanwhile, now serves as president of the St. Petersburg Chapter of Mended Little Hearts, which meets the first Tuesday of every month in ACH's CVICU conference room. And Jamie and Rodney last month welcomed a new addition to their family, a baby boy named Jarod. "He's heart healthy," Jamey says.
But for those children who are not, she and Mended Little Hearts are there to provide support, information, insights from guest speakers and, more than anything, hope.