Jacob was diagnosed with hypoplastic left heart syndrome before he was even born. He underwent his first open-heart surgery within his first few days of life and several other heart surgeries throughout his childhood, a common pathway to correct this type of congenital heart defect.
“Jacob’s journey has been tough. His delicate heart and surgeries as a baby has led to other medical challenges and he has visited the emergency room more times than we can count,” she said.
After his third open-heart surgery at age 4, Jacob began experiencing seizures and suffered a stroke.
“Jacob’s developmental differences started to show soon after his seizures began and around the time he started kindergarten,” says Rosalyn. “The intense seizures would affect his heart rate, making it beat slowly," she said.
Jacob was referred to the Neurocardiac and Development Program at Nicklaus Children’s, which is dedicated to children like Jacob who have heart disease.
“It is common for children who undergo heart surgery within the first few years of life to experience developmental differences. This multidisciplinary program aims to support families of children with heart disease, to maximize their growth and development. We provide testing and educational resources and work alongside their families to set them up for lifelong success,” said Dr. Yadira Martinez-Fernandez, who serves as Director of the Neurocardiac and Development Program at Nicklaus Children’s Hospital.
During a single appointment, the patient and family meet with the cardiologist, neurologist, neuropsychologist, and if needed, other specialists such as a geneticist. The clinical team then creates a care plan for the child to ensure that any developmental differences or learning needs are met promptly.
“What I love about the neurocardiac and development program is that we don’t have to make five different appointments, we see all the specialists together all at once. It is so easy for the child and the parent, and he gets the specialized attention that he needs,” said Rosalyn.
Thanks to the help of the dedicated team, Jacob was placed on a combination of medications that have helped him manage his seizures and keep his heart rate stable. He was diagnosed with autism spectrum disorder and, through the program, was connected to educational programs that catered to his unique abilities.
Jacob is now attending high school for students with special abilities and is most enjoying his elective courses, cooking and dancing.
Rosalyn says she owes Jacob’s positive outlook and infectious personality to all those that have helped and continue to help him on his journey. “We are grateful to have met some amazing doctors along the way who have helped him on his journey.”
