Atrial Septal Defect: Ryan's Story

Ryan Badolato was diagnosed with an atrial septal defect and a partial anomalous pulmonary venous return at the age of 13. He describes his experience and his open heart surgery at CHOP.

Growing up, I always thought I was a healthy kid. My height and weight were perfect and I was athletic. I had never broken a bone, had never had a cavity and always had perfect attendance at school. I finished my freshman year in high school in 2009 at the top of my class.

The week after the school year ended, I visited my pediatrician, Linda Barkasy, MD, at CHOP Primary Care in West Grove, PA. The visit was for a routine physical, but it turned out to be anything but routine.

ryanWhen Dr. Barkasy listened to my heart, she heard a strange “echo” noise. She said I had a heart murmur and that I should schedule an appointment with a pediatric cardiologist. She told my dad and me that many children have heart murmurs and it was probably nothing to worry about.

Four days later, I went to the CHOP Specialty Care Center in Springfield for an appointment with CHOP cardiologist Alexa Hogarty, MD.

Dr. Hogarty ran several tests on me. One of the tests was an echocardiogram, and it took a very long time. That is when I first realized something might be wrong with my heart.

Dr. Hogarty told us that I had a hole in my heart and it needed to be fixed with a patch. I did not realize what my dad had quickly figured out — that a “patch” meant open heart surgery.

Open heart surgery 

I had a hole between my left and right atria — a condition called an atrial septal defect (ASD). And, like many patients with an ASD, I also had a partial anomalous pulmonary venous return, a congenital heart defect in which one or more of the pulmonary veins are connected to the heart incorrectly.

My surgery was scheduled for July 14, 2009, less than one month after my diagnosis.

I held up pretty well over the next month, but my parents struggled with their emotions because their 13-year-old son — who seemed to be in perfect health  was about to go through open heart surgery.

There was one question about my surgery that my parents dreaded having to answer. The question popped up one night while we were out for dinner.

I asked, “How are they going to operate on my heart if it is beating?”

My dad told me they couldn’t. I would be placed on a cardiopulmonary bypass machine during my surgery and the machine would do the work of my heart and lungs. His explanation of the procedure included a wonderful analogy of not being able to work on a car engine while the motor is running.

Questions about surgery

I soon got the opportunity to ask many more questions. Before my surgery, we visited CHOP to find out more about the procedure, to tour the Hospital, and to meet some of the cardiac staff, including Stephanie Fuller, MD, my cardiac surgeon.

Dr. Fuller was more than I could have asked for — she was up front with me and explained everything about my surgery. The night before my surgery, I got to choose what my dad made for dinner (barbecue chicken!). Inside, I feared it would be my last meal, but I knew I would be in good hands at CHOP.

I broke down emotionally on the drive to CHOP that Tuesday morning, but was fine by the time we got there.

My parents gave me two shirts before we headed up to the Cardiac Center. One said “I Survived Open Heart Surgery” and the other said “Chicks Dig Scars.” They lightened my mood and helped alleviate some of my stress.

When it was time to change into my hospital gown, what was happening really hit me and I became very upset. I knew that Dr. Fuller was a great doctor and would do her best, but I still feared I might die.

My parents were allowed to stay with me as I was wheeled up to the doors of the operating room. After long hugs and many tears, my last words before I entered the OR were “Dad, don’t let them do it.”

For the next few hours, my mom, dad and grandparents sat in the waiting room, worrying.

After surgery

I can’t clearly remember much from right after my surgery. Tuesday afternoon was mostly a blur, but I do remember bits and pieces. That first night in the Hospital was very difficult because I could not stay asleep.

My dad stayed at the Hospital with me, sleeping on a sofa next to my bed, and my mom was able to stay at the nearby Ronald McDonald House. I recall several relatives visiting me, but I was constantly dozing off.

The morning after my surgery, I had to start my recovery (sitting up, getting my chest tubes removed, etc.).

Kara Landrum, one of the child life specialists who had stopped by during my pre-op procedures to ask about my interests, surprised me with tickets for me and my family to attend a Phillies game three weeks later. The tickets were compliments of Lidge’s Legion, an organization that Brad Lidge — who played for the Phillies at the time — founded to benefit CHOP. What an incentive! The thought of being well enough to attend a game so soon, and to meet Brad Lidge, was amazing.

That evening, I gathered up the strength to start to walk and was able to check out the teen activity area in the Cardiac Care Unit. Soon I was speeding around, and my parents urged me to take it easy. I spent the next few days watching ESPN and playing video games. I enjoyed the hospitality of the staff and especially liked the food. My stay debunked the myth that hospital food is gross!

Going home

By Friday, I was ready to go home. It felt so good to be outside again. When I got home, I was greeted by my dogs and my cat. When I was eating breakfast the next morning, I started to get sick, so my parents raced me back to CHOP right away.

I spent the day in the Emergency Department until it was determined that everything was OK and I was able to keep food and liquids down again. My appetite returned that night and I even requested pizza from my favorite local restaurant.

My surgery had gone very well. Dr. Fuller fixed the ASD and also did an anomalous vein repair. I had to take it easy for the rest of the summer, not swimming or riding my bike, but that was fine with me because my heart was fixed. I will never forget that summer, nor will I forget the people who made so many more of them possible.

Whenever I visit Dr. Barkasy now, I always thank her. She was the one who initially detected the problem with my heart and played a crucial role in saving my life.

The future

Today, I am a healthy teenager with a cool-looking “zipper” scar that I like showing off. I recently graduated from high school and plan to attend the University of Delaware next year, studying to become a history teacher.

Every year, I go in for a routine cardiology checkup, but I now know I have nothing to worry about. I am grateful to everyone at CHOP who offered support and took care of me during the summer of 2009.

Without them, the life I have now simply wouldn’t be possible.

By Ryan Badolato, July 2012