by Sean McFarland
Jerry Romain is much like any other 11-year-old boy. He excels in middle school, attends Sunday school, and is interested in running track and field. He also loves posting video game videos to YouTube.
“Me and my friend,” Jerry said. “We’re creating another channel for both of us, where we upload more videos instead of just Minecraft videos. Just other games we have; and then we put it on the channel.”
Jerry’s enthusiasm for his friends and hobbies are unhindered, a testimonial for the precise diagnosis and treatment of an underlying congenital heart condition.
Jerry was diagnosed with coarctation of the aorta, by Kathleen Guarino, NP at Lifespan’s Pediatric Heart Center. Coarctation of the aorta is a rare cardiac condition that restricts blood flow to the body. In the United States, the disorder is typically mended with surgery in infancy. But because Jerry and his family moved from Haiti in 2010, Jerry’s diagnosis didn’t come until he was eight years old. Soon after an ultrasound confirmed Kathy’s suspicions, he underwent corrective surgery at Boston Children’s Hospital.
Jerry’s mother, Mona, was still adjusting to life in the United States and was relieved to find ample assistance from The Pediatric Heart Center.
“They helped me with everything in Boston,” Mona said. “They called for me, had a house for me to stay in, everything. They came to pick us up at four o’clock in the morning because the appointment for surgery was at 5:30 a.m. and we had to check in 30 minutes early.”
After having a stent inserted and the abnormality corrected, Jerry was sent home. Today, he undergoes regular checkups at the Pediatric Heart Center at Hasbro Children’s Hospital with Kathy Guarino-Goba, CPNP. Mona sings her praises and prays for her.
“Kathy is very good to us,” Mona said. Jerry nodded his head. “Since we’ve been here in 2012, she’s been like a mom for us.”
Kathy introduced Jerry and his family to Gabrielle’s Heart Camp in Burriville. The camp, run by Lloyd Feit, MD, director of Lifespan’s Pediatric Heart Center, serves as a three-day summer retreat for children with heart defects and heart disease.
“It was fun,” said Jerry. “We had a dance and there were different activities. You could play soccer and archery. Then, there was a pool and you could also ride around in go-karts.”
Because Jerry is bilingual in English and Creole, he continues to occasionally serve as translator for his mother. But it isn’t as if Mona needs much help herself. Not only is she just two years from graduating from nursing school, but she also leads in her ESL classes at CCRI. Mona also attends Mass weekly and teaches Sunday school at a local church—all while parenting three children and working night shifts at the hospital.
For now, Jerry will continue to visit the Pediatric Heart Center for routine checkups giving him the ability and skills for independent health care management.
“We’ve been working on him knowing his diagnosis, his medicines, and the doses,” Kathy said. “He knew all the medications last time. And the diagnosis?”
“I knew it the other day,” said Jerry. “Coarctation?”
“Yes!” said Kathy. “He knew it began with a ‘C’ last time. He takes some responsibility for his medicines; his mom reminds him, but he’s doing pretty good.”