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Middle-schooler recovering from heart surgery at center of fight to raise awareness

| Monday, Feb. 10, 2014, 2:25 p.m.
Gregory Guzzo, 13, of Arnold is surrounded by some of the pillows he received while he recovered in Children's Hospital of Pittsburgh from open-heart surgery in December 2013. Photographed in his home on Saturday, Jan. 25, 2014.
Jason Bridge | Valley News Dispatch
Gregory Guzzo, 13, of Arnold is surrounded by some of the pillows he received while he recovered in Children's Hospital of Pittsburgh from open-heart surgery in December 2013. Photographed in his home on Saturday, Jan. 25, 2014.
Gregory Guzzo, 13, shows off the 'beads of courage' he earned while undergoing treatment for his congenital heart defect. The Arnold boy needed open-heart surgery in December 2013 to repair his heart. Photographed in his home on Saturday, Jan. 25, 2014.
Jason Bridge | Valley News Dispatch
Gregory Guzzo, 13, shows off the 'beads of courage' he earned while undergoing treatment for his congenital heart defect. The Arnold boy needed open-heart surgery in December 2013 to repair his heart. Photographed in his home on Saturday, Jan. 25, 2014.
Gregory Guzzo, 13, holds the 'beads of courage' he earned while undergoing treatment for his congenital heart defect. The Arnold boy needed open-heart surgery in December 2013 to repair his heart. Photographed in his home on Saturday, Jan. 25, 2014.
Jason Bridge | Valley News Dispatch
Gregory Guzzo, 13, holds the 'beads of courage' he earned while undergoing treatment for his congenital heart defect. The Arnold boy needed open-heart surgery in December 2013 to repair his heart. Photographed in his home on Saturday, Jan. 25, 2014.
A pillow that was given to Gregory Guzzo, 13, of Arnold by Jameson's Army and was signed by Gregory's nurses and doctors at Children's Hospital of Pittsburgh while he was recovering from open-heart surgery in December 2013. Jameson's Army is a Pittsburgh-based organization that raises awareness and money for research into congenital heart defects. Photographed at Guzzo's home on Saturday, Jan. 25, 2014.
Jason Bridge | Valley News Dispatch
A pillow that was given to Gregory Guzzo, 13, of Arnold by Jameson's Army and was signed by Gregory's nurses and doctors at Children's Hospital of Pittsburgh while he was recovering from open-heart surgery in December 2013. Jameson's Army is a Pittsburgh-based organization that raises awareness and money for research into congenital heart defects. Photographed at Guzzo's home on Saturday, Jan. 25, 2014.
A scar is one of the few signs that an otherwise healthy-looking Gregory Guzzo, 13, of Arnold has a congenital heart defect that required open-heart surgery in December 2013 to repair. Photographed at his home on Saturday, Jan. 25, 2014.
Jason Bridge | Valley News Dispatch
A scar is one of the few signs that an otherwise healthy-looking Gregory Guzzo, 13, of Arnold has a congenital heart defect that required open-heart surgery in December 2013 to repair. Photographed at his home on Saturday, Jan. 25, 2014.
The 'beads of courage' Gregory Guzzo, 13, earned while undergoing treatment for his congenital heart defect at Children's Hospital of Pittsburgh. The Arnold boy needed open-heart surgery in December 2013 to repair his heart. Photographed at his home on Saturday, Jan. 25, 2014.
Jason Bridge | Valley News Dispatch
The 'beads of courage' Gregory Guzzo, 13, earned while undergoing treatment for his congenital heart defect at Children's Hospital of Pittsburgh. The Arnold boy needed open-heart surgery in December 2013 to repair his heart. Photographed at his home on Saturday, Jan. 25, 2014.
Gregory Guzzo, 13, of Arnold and his family stand with state Sen. Jim Brewster, D-McKeesport, in the Senate chamber at the state Capitol in Harrisburg on Tuesday, Jan. 28, 2014, after Brewster introduced a proclamation recognizing Congenital Heart Defect Awareness Week. Pictured from left are: Gregory’s father, Greg Guzzo; sisters Madison Enciso, 10, and Gillian Guzzo, 11; Gregory; Sen. Brewster; Gregory’s stepfather, Jeremy Enciso; and mother, Katie Guzzo.
Photo courtesy of Sen. Jim Brewster
Gregory Guzzo, 13, of Arnold and his family stand with state Sen. Jim Brewster, D-McKeesport, in the Senate chamber at the state Capitol in Harrisburg on Tuesday, Jan. 28, 2014, after Brewster introduced a proclamation recognizing Congenital Heart Defect Awareness Week. Pictured from left are: Gregory’s father, Greg Guzzo; sisters Madison Enciso, 10, and Gillian Guzzo, 11; Gregory; Sen. Brewster; Gregory’s stepfather, Jeremy Enciso; and mother, Katie Guzzo.
Gregory Guzzo, 13, of Arnold recovers from open-heart surgery at Children’s Hospital of Pittsburgh on Dec. 13, 2013.
Photo courtesy of the Guzzo family
Gregory Guzzo, 13, of Arnold recovers from open-heart surgery at Children’s Hospital of Pittsburgh on Dec. 13, 2013.
Gregory Guzzo’s congenital heart defect was discovered following a routine sports physical in October 2013 as he was preparing to participate in the Valley Middle School wrestling program. Guzzo, now 13, previously had participated in the Valley Youth Wrestling program for five years. Photograph from the 2012-13 wrestling season.
Photo courtesy of the Guzzo family
Gregory Guzzo’s congenital heart defect was discovered following a routine sports physical in October 2013 as he was preparing to participate in the Valley Middle School wrestling program. Guzzo, now 13, previously had participated in the Valley Youth Wrestling program for five years. Photograph from the 2012-13 wrestling season.

A few months ago, Gregory Guzzo of Arnold appeared to be a perfectly healthy adolescent.

An active seventh-grader in Valley Middle School, Gregory was playing soccer and anticipating the start of wrestling season. He was looking forward to his 13th birthday on Nov. 12 and the Thanksgiving and Christmas holidays.

A routine physical in late October drastically altered his plans: Gregory had a heart murmur. Within days, his family learned he had a congenital heart defect.

He needed open-heart surgery to repair a hole in his heart that had gone undiagnosed since birth.

Wrestling this winter was out of the picture, as was gym class, sledding — and even walking the two blocks to school.

“I was taken aback because he was fine,” said his mother, Katie Guzzo. “There had been nothing wrong.”

“When I first found out, I was floored,” said Greg Guzzo, his father.

Gregory had the surgery on Dec. 13 and is recovering. A long scar bisecting his chest is the only obvious sign of his ordeal.

He returned to school on Jan. 13, exactly one month after the surgery.

“I'm way more tired, but I feel fine,” Gregory said. “I feel the same.”

But his condition will have two long-lasting effects. His heart will need to be monitored for life.

And the effort to raise awareness of congenital heart defects has gained several new allies.

The family, which includes Gregory's stepfather, Jeremy Enciso, and sisters, Gillian Guzzo, 11, and Madison Enciso, 10, is working to make sure as many people as possible know about congenital heart defects.

They hope that a cure will be found and that other children won't have to go through the same upheaval.

“I was ignorant to the whole congenital heart defect world,” Katie Guzzo said. “That's not good. If I was ignorant to it, so many other people must not be educated on it, too.”

Raising awareness

They've started Gregory's Heart Warrior Foundation with the primary aim of raising money for the Heart Institute at Children's Hospital of Pittsburgh, where Gregory was treated.

At the urging of Gregory and his family, proclamations recognizing Congenital Heart Defect Awareness Week, which runs from Feb. 7 to 14, were issued by Gov. Tom Corbett; state Sen. Jim Brewster, D-McKeesport; Pittsburgh Mayor Bill Peduto; New Kensington Mayor Tom Guzzo, who is a distant relative of Greg Guzzo; and Arnold Mayor Larry Milito.

Brewster invited the family to Harrisburg on Jan. 28 to hear the resolution introduced in the Senate and to tour the state Capitol.

“I was shocked at the number of cases of heart defects. People don't talk about it a lot,” said Brewster. “That's why I think what they've done — with the foundation to draw awareness, attention and funding for earlier detection — it's a tremendous cause.”

Congenital heart defects are the most common type of birth defect in the country, occurring in about 40,000 births, or nearly 1 percent, each year, according to the Centers for Disease Control and Prevention.

Based on decade-old studies, the CDC estimates about 1 million Americans are living with a congenital heart defect.

Dr. Leif Lovig, a staff cardiologist with Children's Hospital's Heart Institute and an assistant professor of pediatrics at the University of Pittsburgh Medical Center, said congenital heart defects can run the gamut from more severe problems that frequently are detected at or shortly after birth to milder defects that may not be found until adulthood, if at all.

“There are lots of people who aren't diagnosed until later in life,” said Lovig, who is treating Gregory.

Milito familiar with defects

Mayor Milito can attest to that. In 1996, Milito, now 53, began to experience a racing pulse and was diagnosed with a heart murmur, or an unusual sounding heartbeat.

He said his condition at first wasn't considered serious. But as the years passed, Milito's heart palpitations worsened, became more frequent and were accompanied by bouts of dizziness.

“I wouldn't be doing anything but sitting here and it (his pulse) would just take off,” he said. In 2007, he finally was admitted to the hospital when his heart began racing up to 180 beats per minute and wouldn't slow back down while he was playing basketball.

After two heart catheterizations, Milito was told he needed immediate open-heart surgery to insert a synthetic valve in his heart to replace his bicuspid aortic valve.

Instead of having three flaps on the aortic valve that pushes blood from the heart to the rest of the body, Milito had only two. And they had worn out, hardened and were no longer functioning properly.

“They told me I was in danger of having a major stroke,” Milito said.

Given his experience with congenital heart defect, Milito said it was a no-brainer to recognize Congenital Heart Defect Awareness Week in the city when he was approached by Gregory's family.

Gregory asymptomatic

Unlike Milito, Gregory had no symptoms such as a racing heart or dizziness. Nothing abnormal with his heartbeat had been detected at previous doctor visits.

“I guess there were symptoms that we didn't realize were symptoms,” Katie Guzzo said.

In hindsight, she said her son's small size likely was a clue. His younger sister, Gillian, is more than half a foot taller than he.

Gregory had participated in the Valley Youth Wrestling program for five years; he usually was one of the older kids in his weight class, said Jeremy Enciso, who helped coach the program.

Gregory would get flushed when he was active, and perhaps tired faster than he should have: “He'd gas out on the mat,” Enciso said.

But the symptoms were easily explained or overlooked, and no doctors sounded any alarms until October, when Gregory needed a physical in order to wrestle on the middle school team this winter.

Gregory had just had a physical in January 2013, so Katie Guzzo said she initially was skeptical when the school doctor called her at work and said he'd detected a heart murmur. He advised her to get Gregory to his pediatrician's office the same day.

The next day, as a technician was conducting an echocardiogram of Gregory's heart, Guzzo became more concerned. Having some experience viewing echocardiogram results from a previous job, Guzzo said she couldn't make sense of what she was seeing on the screen.

“There should have been a wall (between the chambers of the heart), but it was just a big hole,” she said. “Then I started to get worried.”

Gregory was diagnosed with atrioventricular septal defect, a combination of problems including a hole between his heart's upper two chambers and an abnormality with the mitral valve between the heart's left chambers, Lovig said.

Gregory was scheduled to have open-heart surgery in December, during which a piece of the pericardial sac around the heart was used to patch the hole. He remained in Children's Hospital for six days, then returned home to recover.

Gregory continues to have some short-term restrictions while his chest heals. He's not supposed to lift anything heavier than 10 pounds, participate in any contact sports, be immersed in water or be outside in temperatures colder than 40 degrees.

Given January's cold weather and the efforts to keep him from getting any type of infection, it's been a long, boring winter of video games for Gregory.

“He's a strong kid and that leant to his recovery,” Guzzo said. “He bounced back really quickly.”

Restrictions vary

What long-term restrictions Gregory will have remain to be seen. Over the course of his life, he may need medications or even more surgeries, Guzzo said.

Once cleared by his doctor, the family is hopeful Gregory will again be able to participate in wrestling, soccer or any other sport he chooses.

Guzzo said they've been inspired by the stories of professional athletes who compete despite having congenital heart defects, such as mixed martial arts fighter Mark Miller.

Other noteworthy athletes with heart defects include Shaun White, who is seeking his third gold medal in snowboarding at the Sochi Winter Olympics, and Pittsburgh Penguins defenseman Kris Letang, who just announced Friday that he recently was diagnosed with a heart defect.

“There's no reason Gregory can't do amazing things,” Guzzo said.

Other than abstaining from riding his motorcycle to avoid possible injuries, Milito said he's under no limitations.

“I have to be careful of bleeding and bruising because I'm on blood thinners,” he said. “But I'm not limited. I can do whatever I feel like I can do.”

Dr. Lovig said restrictions on people with congenital heart defects vary depending on the type of defect they have and what is done to correct or treat them.

For Gregory, “There shouldn't be long-term restrictions on playing sports,” Lovig said. “There may be some restrictions on the type of sports he should play, depending on whether there's stress on heart valve.”

Family activism

While waiting for the all-clear from the doctors, Guzzo hopes one of those amazing things Gregory does will be speaking out on behalf of children who have congenital heart defects.

The family is establishing the fundraising foundation, which benefits the Heart Institute at Children's.

One of the things Gregory hopes to do is get more toys and activities in the hospital as older children like him recover from procedures.

They want to start a family-friendly “heart walk” and concert in Arnold and New Kensington.

The family is advocating for the state Legislature to pass Senate Bill 545, which would require all newborns to undergo a pulse oximetry test. It measures the amount of oxygen in a baby's blood and can help identify congenital heart defects.

Katie Guzzo hopes people who hear Gregory's story take those routine physicals and doctor visits more seriously.

Lovig said the increase in regular pediatric checkups and sports-related physicals has helped doctors diagnose conditions that otherwise may have gone undetected and, in some cases, could pose a significant health risk.

“It's great that Gregory's case was identified and speaks to the importance of getting kids in to be evaluated,” Lovig said.

He said one of the goals of sports physicals typically is to identify children at risk of sudden cardiac death from an undiagnosed heart abnormalities.

Lovig said Gregory did not fall into that high-risk category, but the boy nonetheless was diagnosed before he ran the risk of developing more serious symptoms relating to his defect.

“Obviously, it was a great thing for him,” Lovig said. “He benefited from an extra set of ears to listen. Any time you can get a child in to have a medical professional listening to them, it's a good thing.”

“If we can minimize the number of kids who have to go through this, that's the most important thing,” Guzzo said. “It's not even about Gregory anymore — it's so much greater.”

Liz Hayes is a staff writer for Trib Total Media. She can be reached at 724-226-4680 or lhayes@tribweb.com.

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