Lines from a heart rate monitor on top of a red heart.

By Eric O’Brien

When I was born in November 1996, the doctors heard a murmur. They did some tests on me and, unfortunately, they had to tell my parents that I had a serious congenital heart condition called tetralogy of Fallot (which meant that I had four defects involving my heart). This was not something my parents were expecting to hear. This was very upsetting to them as I was their first child. Fortunately, the cardiologist and cardiovascular surgeons knew they could help me. If I had been born 10 years earlier, I probably would not have survived for very long. When I was 2 months old, Dr Jacques LeBlanc performed a Blalock-Taussig shunt operation to help improve my oxygenation levels so I could get bigger for the really big operation that was coming. When I was 10 months old, the doctors felt I was ready for my reconstructive open-heart surgery that would finally fix my heart.

Unfortunately, on one of my check-ups, my cardiologist Dr George Sandor realized that I had developed complications. A heart catheterization showed that I had developed a stenosis (narrowing) around my aorta and the patch used to repair my septal defect was leaking. The pressure in my heart was very high because of the narrowing. My heart had to pump very hard to get my blood through this narrowing. I was in danger of going into cardiac arrest. So, it was back to the operating room for me. This news was devastating for my parents. They had thought all that surgery stuff was behind me.

Dr LeBlanc said to my parents in his very succinct manner, “Don’t worry. You won’t lose him.” It just happened at this time that Children’s Hospital also wanted to do a vignette of a family dealing with a child requiring heart surgery and they filmed my parents and me the day before and on the day of my surgery. They showed this vignette on the Children’s Hospital Telethon. Dr LeBlanc was able to remove the stenosis and repair the leaking septal patch. Unfortunately, when they tried to get me off the bypass machine and get my heart started again, they discovered that I was in heart block. The electrical signals between the atria and ventricles had been cut. My ventricles were not pumping. This meant that they had to put me on a temporary pacemaker. They had hoped with time my ventricular function would return, but it did not. So, back to the operating room and a permanent pacemaker was put in my abdomen and leads attached to the outside of my heart. Now everything was working as it should be.

Every year, I would go in and have my check-ups and get my pacemaker interrogated (a computer talks to my pacemaker and asks how everything has been over the year). Most of the time, it is fine. Sometimes the generator needs a little tweaking with the settings. The battery doesn’t last forever and I had to have the generator replaced when I was 10 years old. This was just a day surgery and everything went as planned. This June, I had to have the generator replaced again. I thought it would just be another day surgery; but, as things would have it, when they got me into the operating room the leads that are attached from the generator to my heart failed. This meant another operation. So, out with the old generator and a new generator was put up in my chest with new leads going through a vein into my heart. The surgeons (Dr Campbell and Dr Gandhi) and cardiologist (Dr Sherwin) were very pleased with the new pacemaker. It is so wonderful that we have such technology, like pacemakers, that can keep my heart beating.

This year in June, my family and I got to go fishing at Critter Cove Lodge on Vancouver Island with other families who have a child with heart disease. This event has been put on for the last 12 years through the generosity of the Forbes family (Critter Cove’s owners) and so many other people. Everything is donated including the ferry ride to the island, bus, food, and accommodations. Even the fishermen donated their time, boats, and equipment to take us out fishing for 2 days. It was so much fun. Apparently, this was the best year for fishing they had ever had. All of the families caught lots of fish. I was lucky to catch two of the biggest fish—two 24-pound spring salmon.

I am grateful for all the help, support, and expertise of the staff at Children’s Hospital. I appreciate the Hearts of Gold support group that I attend with other cardiac youth. It is nice to meet other people who have heart issues and understand what you have been through. Thank you for all you have done for me and my family and continue to do. I cannot adequately express my appreciation for all that has been done for me.