Canton Township teenager diagnosed with hypertrophic cardiomyopathy
CANTON TWP. − When Armonnie “Monnie” Hawkins was born premature at 30 weeks, he was diagnosed with a heart murmur; a fairly common condition that most children overcome when they grow older.
He spent a month in the neonatal intensive care unit due to other issues, including pyloric stenosis, a stomach muscle condition that causes forceful vomiting the first few months after birth.
An active boy who loves sports, Armonnie never had any physical problems since growing up, other than asthma. But last August, a screening in preparation for school sports detected the murmur in the now 14-year-old.
“They wouldn’t clear him until he went to see a cardiologist,” his mother Nicole Spencer said. “We thought it was nothing, that he would get into football.”
But after undergoing an EKG in his pediatrician’s office, the incoming Canton South High School freshman underwent an additional battery of tests at Akron Children’s Hospital that included a second EKG, an MRI, an echocardiogram, and a stress test, which detected some stiffness in the heart. He was diagnosed with hypertrophic cardiomyopathy.
What is hypertrophic cardiomyopathy?
A genetic anomaly, hypertrophic cardiomyopathy is the thickening of the heart, which makes it more difficult for it to pump blood to the rest of the body. Most people live a normal life, but it can be serious for others.
According to the Cleveland Clinic, hypertrophic cardiomyopathy affects 600,000 to 1.5 million Americans or 1 in 500 people. Symptoms include chest pain, fatigue, difficulty breathing and abnormal heartbeats.
It is the most common cause of sudden cardiac death in people under age 35, especially among athletes. Treatments include lifestyle changes and medication.
Spencer said she’s sharing their story to increase awareness of hypertrophic cardiomyopathy.
“Maybe a parent thinks their kid has asthma, and maybe it’s this,” she said.
There is no statewide requirement regarding heart screenings for student athletes. The NCAA endorses and recommends EKG tests for college-level student athletes. But the American Heart Association doesn’t recommend routine echocardiograms for pre-participation sports.
“Instead, these tests should be used as follow-up if an initial screening raises suspicions about the presence of a cardiovascular disease,” it says.
But the concern isn’t just for athletes. The Denville, New Jersey-based Hypertrophic Cardiomyopathy Association wants to expand cardiac care screenings to all children under 19. The organization is promoting the Healthy Cardiac Monitoring Act.
How did Armonnie Hawkins respond to diagnosis?
“He wasn’t allowed to elevate his heart rate or do anything, and I mean, wow, that diagnosis and having my 13year-old at the time to be told he can’t do anything,” Spencer said. “He’s been in basketball since he was about 4.”
Spencer said genetic testing revealed that Armonnie acquired the gene from his dad. Testing on their daughter, Jada’marie, 11, turned up negative.
The news was crushing for the boy who aspired to play in both the NFL and the NBA.
“I was mad and sad, but I know they were just trying to help,” he said.
Meanwhile, Spencer, a physician service manager with Medline Industries, was doing some online research about hypertrophic cardiomyopathy when she found Dr. Kenneth Zahka, a Cleveland Clinic cardiologist.
“He agreed to see us right away,” she said.
Echoing the American Heart Association, Zahka said young athletes should not be undergoing an EKG as part of a routine pre-sports screening.
“That’s really risky and not our current practice,” he said. “The important thing is that everybody go through a routine Ohio sports ccreening process,” he said. “That’s really the way we’re going to pick people up. That’s really the best way to keep our athletes safe.”
After meeting with Zahka and undergoing more testing, Armonnie was prescribed Valsartan, which is used to treat hypertension and heart failure.
“Remember, the heart is actually a muscle that’s pumping blood,” Zahka said. “It’s essential because it carries oxygen and blood and everything to our tissues and our body. Our body knows how to make muscle because of our genes and chromosomes that are able to tell the heart how to form muscle. Most of the time, the heart muscle is constructed perfectly normally.”
Cleveland Clinic’s Dr. Kenneth Zahka: Most patients are identified through family history
Zahka said researchers today know a lot about the gene which helps to construct the heart.
“For people who have cardiomyopathy, hypertrophic means ‘too thick,’” Zahka said. “The instructions on how to build the heart muscle are not thick. We also know that even though the instructions in building the heart muscle are not normal, the body’s pretty smart; there must be a bunch of workarounds because some of this abnormal heart muscle, and particularly the thickening doesn’t show up until later in childhood, or in adulthood.”
A condition that affects all races, and men and women relatively equally, Zahka said.
The condition is complex, he added, because “there’s a lot of variability.”
Zahka said the vast majority of hypertrophic cardiomyopathy patients are identified through their family history.
“The gene is passed on from generation to generation,” he said. “At least 60% of our patients are diagnosed because of one of their relatives, usually the mother or father, like in Armonnie’s case. There are times we’ll diagnose and then the parent is diagnosed after that.”
Zahka said Armonnie was properly diagnosed by Akron Children’s Hospital cardiologists.
“His mother sought out our expertise because we were one of the Hypertrophic Cardiomyopathy Association Pediatric Centers of Excellence,” he said.
He noted that sometimes, even genetic disease have been known to skip a generation.
“That’s what’s called ‘variable penetrance,’” he said.
There also can be variabilities of hypertrophic cardiomyopathy within a family, Zahka said.
“They’ve got the same gene, but it shows up in a different ways,” he said. “That’s why parents can have it and don’t even realize it.”
Zahka said he became interested in treating hypertrophic cardiomyopathy 30 years ago as a result of treating Amish families who had the gene. The condition is relatively common within the community.
No cure for hypertrophic cardiomyopathy
There is no definitive cure for hypertrophic cardiomyopathy, rather, it is treated like a chronic condition.
“The first is to say, ‘How does this affect you?’” Zahka said. “And we have very thoughtful approach. You have to take very careful history. You have to do a physical exam to listen for times of abnormal blood flow. We have to do electrocardiograms to look for heart rhythm changes. We do echocardiogram ultrasounds and MRIS sometimes to look at the thickness of the heart muscle, the strength, and relaxation of the heart muscle. We do exercise. We really have to understand the current data and how it changes over time.”
Zahka said that while medication and monitoring might be enough for many patients, there may cases when the heart muscle thickens to point where some of it may have to be surgically removed.
“It may be that the heart rhythm might be dangerous enough that you need the help of a special pacemaker called an internal cardiac defibrillator,” he said. “It’s really designed to be used, based on what the patient’s body is telling us. So, there’s a broad spectrum of treatment.”
Armonnie responds well to treatment
Zahka said Armonnie has responded well to treatment, adding that he’s designed an activity program to keep the teen active because inactivity can be more dangerous by triggering obesity and depression.
“Sometimes, we forget sports is one of those pathways to happiness,” he said. “Sometimes, we ask schools for accommodations. We’ve asked him, ‘Please don’t do things that tells the heart muscle to get thick.’”
Spencer said her son currently has a workout prescription but currently is prohibited from playing full-contact football.
“He has a new stress test on July 12 which will determine if he is allowed to play,” she said. “If so, knowing the risk factors, which would be considered low risk (if approved)...he has been told and has a letter from the Cleveland Clinic that he can condition with his own small workouts with the football team, but he has not gone yet. I think he will feel more comfortable after July 12, or even if he feels up to it.”
In addition to medication, the Cleveland Clinic’s treatment plan for hypertrophic cardiomyopathy also includes counseling to help patients make good lifestyle choices.
“This is something you can live with,” Zahka said.
Spencer said that as a result of Monnie’s diagnosis, the family’s lifestyle has completely changed — for the better. They’ve reduced their intake of sodium and red meat, and increased their water consumption.
She noted that her son hasn’t needed his inhaler since his treatment began.
“My daughter now knows how to work an AED,” Spencer said.
Armonnie said he’s now thinking of pursuing a career in music.
Reach Charita at 330-580-8313 or charita.goshay@cantonrep.com.
On Twitter: @cgoshayrep