As debilitating as hypoplastic left heart syndrome and pulmonary stenosis may sound, the thousands of teens living with such heart conditions in Nevada often go unsuspected, distinguishing themselves by their accomplishments rather than their medical records.
At 3 weeks old, Clark High School sophomore Brooke Rue was given a week to live by the doctor who mistook her two-chamber heart for four.
Rue was diagnosed with hypoplastic left heart syndrome, plus a lung condition that often accompanies heart conditions. Once diagnosed, Rue went through multiple open-heart surgeries at Sunrise Children’s Hospital. Rue’s mother, Mindy Scott, thanks the cardiologist in charge of the operations, Dr. Gary Mayman, for her daughter’s recovery.
“She’s my miracle child,” Scott said.
Because of multiple surgeries and ongoing medication, her condition is managed. And Rue has found an interest in photography, which puts minimal strain on her body. Her three pit bulls are huge parts of her life, too, and are often the focus of her photos.
“We haven’t treated her any different or babied her because we want her to live as normal a life as possible,” Scott said.
Brandon Jacobs was 5 when his constant sleeping forced his parents to seek medical help.
“I was sleeping a lot. I’d wake up and then go right back to sleep. Everywhere I went I was falling asleep — on the school bus, everywhere,” the Eldorado High senior said.
Doctors diagnosed him with pulmonary stenosis, meaning two holes in the heart, which are separately called atrial and ventricular septal defects. After a failed attempt to operate through Jacobs’ leg, they performed open-heart surgery.
Jacobs now has a scar through the middle of his chest from the surgery, and others where tubes were inserted.
“My life is pretty normal now; I get to live a normal life with a fixed heart,” Jacobs said.
During an ultrasound at 7 months, doctors found abnormalities in the heart of Las Vegas Academy senior Andrew Robinson, and determined he would most likely not live to birth.
Against all odds, Robinson survived, but with hypoplastic right heart syndrome and tricuspid atresia. He also has an atrial septal defect.
Robinson has had three heart surgeries at Sunrise Hospital Medical Center, and the corrections allow him to be almost completely unaffected by his illness. He has never had to sit out of physical education class and is able to play trumpet in his school’s magnet band program.
Mayman was responsible for Robinson’s operations, too. Robinson’s mother says she can’t rave enough about the doctor and his staff for the work they did.
For Palo Verde sophomore Adam Afromsky, things were different. He didn’t experience any problems until he was in high school, after playing sports his whole life.
Five minutes into a soccer game on May 12, 2012, Afromsky fell to the ground in cardiac arrest. An emergency room doctor and nurse at the game ran to his side to perform CPR until an ambulance could arrive with the defibrillator that ultimately saved Afromsky’s life.
“Once I came around, I felt like I woke up from a thousand years’ sleep,” Afromsky said. “I don’t remember anything that happened.”
After months of physical and genetic testing, plus a physical “lockdown” and drug challenges to test the strength of his heart, Afromsky still has not been diagnosed. He is focused on getting back into sports, which were a big part of his life before the incident.
“There’s still the stress that it could happen again,” said Melanie Afromsky, Adam’s mom. “He doesn’t worry, but we do. That’s the parents’ job.”
Amid the negatives, positives have come out of these teens’ experiences.
Afromsky’s near death prompted his family to begin pushing to get sporting fields better-equipped for medical emergencies. They have proposed a requirement that all athletic fields have defibrillators in case of scenarios like Adam’s, where he could have died. Meetings with local officials are just the start of the effort, along with fundraising.
“It’s important to have these (automated external defibrillators) out there, and for coaches in cities to be CPR certified,” Melanie Afromsky said.
Children’s Heart Foundation, a nonprofit organization based out of the Children’s Heart Center, fundraises for families with Nevada children suffering from heart conditions. Some of this money goes toward hosting an all-expenses-paid summer camp for kids including Afromsky, Robinson, Rue and Jacobs.
“We’ve never had to give anything for him to go, which is pretty incredible,” said Robinson’s stepdad, Shawn Belleque.
More than 50 kids attend Camp Mend-a-Heart, which serves as a cost-free, medically supervised opportunity for kids with heart conditions to experience a traditional summer camp under medical supervision.
Going to camp and getting to know other kids with similar conditions has made a big impact for teens such as Rue.
“(The camp) changed her personality from Day One,” said Rue’s mother, Mindy Scott. “It made it to where she doesn’t really care that she has a heart condition.”
Jacobs also said the camp changed the way he sees his condition.
“Meeting all the heart kids at camp was a positive. It’s cool to know there’s other people out there like me,” Jacobs said.
Nobody is dealt the perfect hand in life, but kids with heart conditions have conquered unfavorable odds to get where they are now. Medical advancements have allowed for more kids with heart conditions to lead the lives they want, in some cases with few or no limitations.
“The only way you can tell there’s anything wrong with her is her scar,” Mindy Scott said.