Four months into her pregnancy, Alma Melena Vaca discovered the unexpected. An ultrasound revealed that one of the four chambers in the heart of her unborn son, Josue, had not developed.
“Right away, I was made aware during the ultrasound that something was not going well,” says Alma. “I was sent to the pediatric cardiac surgery clinic at Miller Children’s & Women’s Hospital Long Beach, and that’s when I met Dr. Setty.”
Shaun Setty, M.D., is the medical director of the Pediatric Heart Center at Miller Children’s. The Pediatric Heart Center provides total pediatric and young adult heart care for patients with congenital or acquired heart disease – like Josue.
For children with heart disease that requires heart surgery, the pediatric cardiac surgery care team works closely with patients and their families – from the initial diagnosis, through the procedure, to discharge and home, to make sure the entire process is as smooth and uncomplicated as possible. And so began Alma’s four-year long journey with Dr. Setty.
“Dr. Setty has been through the whole process with me,” describes Alma. “The day I met him, I was so scared and he was so calm. He explained Josue’s condition and that there would be a three-step surgery involved to help care for it.”
“Our surgical care team is one of the best,” states Dr. Setty. “It’s comprised of a special team of individuals that are able to deal with the complex intricacies of congenital heart disease, like Josue’s.”
Josue was diagnosed with a rare congenital cardiac lesion known as pulmonary atresia with intact ventricular septum with coronary fistulae and sinusoids, where the rights side of the heart is underdeveloped, disrupting part of the heart’s blood supply coming from the that chamber. The addition of the coronary artery abnormality created an additional risk to an already complex condition, which would require three surgeries that would take place over the first four years of Josue’s life.
“I didn’t know how to take it at the beginning,” says Alma. “I asked Dr. Setty questions, and he explained that the procedure and process was hard, but that it was something that could be done. And even though I was worried, I believed in him.”
Alma gave birth to Josue at the BirthCare Center at Miller Children’s, located on the same hospital campus as the congenital cardiac operating room in the MemorialCare Heart-Vascular Institute at Long Beach Memorial. This allowed her son immediate access to the specialized pediatric care he’d need. Three days after his birth, Josue was prepped and taken in for the first of three surgeries he would have on his heart. The three surgeries, together known as the Fontan single ventricle palliation pathway, would allow Josue’s heart to function with only one heart chamber.
The surgery was a success, but left Alma feeling unsure of how to care for her newborn child in his fragile condition. “Going through the surgery the first time was really hard,” recalls Alma. “They showed me step by step what I had to do to care for Josue. The nurses helped me, and I got to learn from them how to best care for him. They made it easier to go back for his second surgery.”
The second surgery was successfully completed a few months later, and the final surgery was completed when Josue turned 4-years-old. Altogether, the three intricate heart surgeries separated the circulation and took the load off of Josue’s missing heart chamber.
“It’s a great relief,” says Alma. “I have been stressed all these years thinking I might not be able to see my son grow.”
For Alma, the greatest comfort was having her son being cared for at a children’s hospital like Miller Children’s, where everything is child-sized – from the expert pediatric care offered by specialized care teams to the kid-friendly surgery rooms.
“You right away see the difference in care at Miller Children’s – you know it’s especially for kids and their families,” says Alma. “It’s in the way the nurses talk to them, or how the Child Life Specialist comforts them and explains the process in a way they can understand. The teamwork they have throughout the hospital is amazing – they’re there to help us, as parents, and make us comfortable.”
Though Josue is finished with the surgery process, he continues to go back to the Pediatric Heart Center’s Cardiology Outpatient Specialty Center to check on his heart.
“Josue doesn’t remember Miller Children’s as being scary and he always asks about his care team,” says Alma. “He’s back to life. Because of that, Miller Children’s will always have a special place in our hearts.”
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