Quinn was three months when he got a cold, and his parents made what they thought would be a routine trip to the pediatrician.
When overnight breathing treatments and a trip to their local emergency room offered no improvement, their pediatrician called for an ambulance to rush them to The Children's Hospital of Philadelphia (CHOP). Quinn's mom, Emily, recalls "that's when we got really worried."
For hours, CHOP Emergency Department doctors worked to figure out what was causing his symptoms. The infant had a chest X-ray, an electrocardiogram and an echocardiogram, among other tests.
"We didn't know what was wrong," his mom remembers. "And that was the worst part."
Finally, Quinn was admitted to CHOP's Cardiac Intensive Care Unit, one of the largest and most sophisticated in the nation. It was the middle of the night. Emily and her husband, Keith, dozed off next to their baby.
Very early the next morning, they were visited by Stephanie Fuller, M.D., one of three cardiothoracic surgeons on the CHOP Cardiac Center team. She brought difficult news: Quinn's labored breathing was an early sign of heart failure. He needed emergency surgery to fix a rare congenital heart defect called anomalous left coronary artery from the pulmonary artery (ALCAPA). In a normally functioning heart, the left coronary artery connects to the aorta and feeds oxygenated blood to the heart tissue. In this heart defect, the left coronary artery is misplaced and the heart doesn't get enough oxygenated blood. Without enough oxygen, the heart tissue can begin to die.
Dr. Fuller drew a picture to explain the diagnosis. "She said, 'This is what's wrong, and this is what we're going to do to fix it,'" Emily recalls. "She said there were going to be a lot of doctors and nurses in the operating room and they were all going to be there to take care of Quinn."
Though Dr. Fuller broke tough news, Emily and Keith remember her visit as a positive turning point. "The whole night was so scary," Emily says. "We were so upset and worried. When Dr. Fuller explained things, it was such a relief. She is the best. She's so nice and calm. I didn't feel scared anymore. I knew they were going to fix Quinn's heart." CHOP's cardiothoracic surgery team is one of the most experienced, performing a high volume of procedures to fix rare and complex heart defects. Families travel from around the nation and the world seeking care from the heart surgeons at CHOP.
The Cappos had Quinn baptized and said good-bye, handing him to the anesthesiologist who would carry him to the operating room and be with him through his open heart surgery. CHOP is one of the only pediatric hospitals in the country with a dedicated anesthesiology team for cardiac patients, who may react differently to anesthesia. Parents have peace of mind knowing this expert team will be there not just for heart surgery, but for any procedure over the years.
Four hours later, Quinn's operation was over. Dr. Fuller and a nurse visited to tell them Quinn was doing well.
Quinn faced a long recovery as his heart slowly healed and he fought a respiratory infection that slowed his progress.
But Emily never felt alone. "Every day we were there, people went out of their way to make sure Quinn was OK," she recalls. The Cardiac Center has an extended team to help patients recover, monitor their development, and keep them occupied. An occupational therapist brought a play mat into Quinn's room for special belly exercises to help him regain strength. A music therapist taught a class in the Cardiac Center playroom, tailoring it for every age present.
Emily has special praise for the Cardiac Center nurses, who were with Quinn nearly every moment. One nurse helped them set up a CarePage, a Web page that helps parents update friends and family. Another taught them to use the naso-gastric feeding tube Quinn would have for several weeks. The nurses were always there to answer Emily's questions. "They always listened when I was worried," she says.
Finally, after six weeks, Quinn was able to go home. For nearly a year, he had home visits from occupational therapists and physical therapists to help him catch up on milestones such as rolling over and crawling. Today he is a healthy, beautiful child. "He's doing everything," his mom says. "He's crazy! You wouldn't even know. He's walking and talking. Everything is, 'What's that?' 'Look at that.' 'Oh wow.' He loves animals and he wants you to blow bubbles all day."
Quinn visits his cardiologist, Matthew O'Connor, M.D., every six months. "I trust Dr. O'Connor," Emily says. "He is always happy to see Quinn and he answers every question I have. I like going to the appointments."
Quinn will need to see a cardiologist regularly for the rest of his life. Emily takes heart knowing the Cardiac Center offers lifelong care. In the event Quinn would need surgery when he is older, he could have the same surgeon he did as a 3-month-old. Dr. Fuller is also part of the surgical team at the Philadelphia Adult Congenital Heart Center, a joint program of CHOP and Penn Medicine. CHOP helps patients transition to the adult program where the team is specially trained in the complex anatomy and heart function of adults born with heart defects.
"We're so lucky that we live here and that we have such great people to take care of him," Emily says. "I trust everything they tell me. I know that they're always going to be taking care of him, and he's always going to get the best care. I don't have any worries."