Super Eddie toughs it out through multiple heart surgeries

From Mother Goose Club songs to Thomas the Tank Engine, Superman, balls and blocks, 18-month-old Eddie Devore's world is chock-full of wonder and awe.

For his parents, John, 35, and Jennifer, 29, Devore, it's also a world of worry, medication schedules, hope and anticipation.

Recently relocated from West suburban Geneva to Pingree Grove, the couple are among scores of Chicago-area parents for whom February's American Heart observance holds special meaning because of their child's congenital heart defect.

February marks the national celebration of American Heart Month and volunteers around the country and locally across the suburbs are teaming up to raise awareness in a variety of ways.

American Heart Association experts say cardiovascular disease is often viewed as a problem facing adults, but it also extracts a terrible toll on babies and children and their families.

Meet Super Eddie

Known as “Super Eddie” to his friends and family, the feisty toddler was born full term in July 2014 with a significant and life-threatening heart condition. Known as hypoplastic left heart syndrome, the left side of Eddie's heart and its structures — including the aorta, aortic valve, left ventricle and mitral valve — were underdeveloped which dramatically impacted heart function.

According to the American Heart Association, babies with this rather rare defect often seem normal at birth but concerns come to medical attention within a few days of birth as the ductus closes. The baby may appear ashen, have rapid and difficult breathing and have difficulty feeding.

“It was just hours after birth at Central DuPage Hospital when doctors realized something was not right and Eddie's oxygen was not where it should be after birth,” recalls John Devore, a Meijer store manager, who says he recalls being reassured by hospital staff that sometimes following a cesarean section delivery, newborns need a little time to adjust.

“That wasn't the case for our son,” explains Devore, who notes how Eddie's oxygen numbers declined overnight in the neonatal intensive care unit and how an echocardiogram was ordered to help determine the cause.

“I first learned of Eddie's heart defect when doctors called me to the NICU,” recalls his mom, Jennifer. “Alone at the time, all I heard were the words ‘significant heart defect' and I was on the phone with my husband to get back to the hospital.”

It's a phone call Eddie's dad won't soon forget.

“I remember I was with my 4-year-old daughter, Ehlena, and my mom when my wife called crying and breaking the news to me on the condition and severity of Eddie's little heart,” recalls John, who says his mind immediately raced back to memories of his nephew, who had been diagnosed with a similar condition as a newborn years earlier.

“It was not good and I literally flew in my car to Central DuPage Hospital to see my son, who was already fully sedated and intubated. I lost it, holding my wife, crying and looking at our son totally in need of help with all the wires and drips all around to keep him alive. It was tough to see my son in so much need.”

In addition to the assisted breathing help, Eddie was immediately put on a drug/hormone called prostaglandin to keep his right heart and left heart connected and open to one another through the ductus arteriosus.

“It was around 9 a.m. when the team at CDH informed us they were not specialized enough to handle Eddie's diagnosis and informed us of the complexity of his congenital heart defect and a rudimentary course on what needed to occur for our son to survive,” Devore states.

Saving Eddie's heart

Eddie was transported to Ann and Robert H. Lurie Children's Hospital of Chicago where doctors were capable of giving a Eddie a shot at life through a series of three surgeries: the first performed near birth (called the Norwood), the next performed between 4 and 6 months of age (the Glenn), and one at 2 to 4 years of age (the Fontan).

“The situation we faced was a very scary one and we had no real choice except to trust the team of doctors, and pray and hope their hands could fix our son,” recalls Devore. “The only other option was to list our son on the transplant list. At his young age this was not really an option due to lack of available hearts. Our choice was easy, but the events were not.”

At 10 days of age, Super Eddie embarked on the first of his tough but many needed open heart surgeries to help mend his broken heart.

“In the days leading up to this day, we were introduced to world-renowned cardiothoracic surgeon Dr. Carl Backer, who on July 21 led a team of doctors performing Eddie's first and most risky open-heart surgery called the Norwood,” he recalls. “The six- to seven-hour surgery went well and Eddie came through like a super hero! It was around 9:30 p.m. that night when we got to see our little heart warrior post-surgery.”

The Devore family began their stay as regulars at Lurie's and as part of the community of Ronald McDonald House near Lurie Children's Hospital.

Eddie spent nine weeks in the hospital, and had his ups and downs during his post-surgical stay, fighting through feeding concerns and weight gain issues, a staph infection and a chylothorax, which minimized his ability properly digest fats.

Later at home, the family settled into the new normal of being heart parents: heart meds for blood pressure, diuretics and specialized formulas for Eddie's health.

“It was a bit bittersweet, as we knew in just another 10 weeks Eddie would be back Dec. 2 fighting through his second open-heart surgery called the Glenn.

The second open-heart procedure lasted seven hours and around 5 p.m. the couple were able to see their son again.

“This surgery had a smaller risk than the Norwood, but nonetheless risky, as Eddie was on bypass for a majority of the surgery time,” recalls dad, who says, “You just hope and pray his heart returns to beating as it did beforehand.”

Eddie again encountered the chylothorax, which lengthened his stay, but on Dec. 23 he was discharged and home for the holidays.

Today the family shares the “no news is good news” approach to life with their heart warrior. While recognizing his condition, they stress they want him to experience all of life. His next surgery, sometime in the coming year or two, will further assist in reducing the workload on his heart and improve his oxygen levels.

“Until then, we take one second, one day, one week at a time and live our lives as a family,” say his proud parents, whose goal is to provide as close to normal a life as possible, despite their thoughts of “what if,” which they try to keep at bay.

For additional information on congenital heart defects, research, advocacy and public policy initiatives, contact the American Heart Association at (312) 346-4675 or visit the association online at www.heart.org/congenitalheartdefects.