When I was born my parents didn't know anything was wrong. I was a happy healthy little girl besides some jaundice. I went home from the hospital on time but was a small girl and had a bit of trouble gaining weight and I slept a lot. At four months my mom took me in for what she thought were ear infections and saw a pediatric cardio thoracic surgery fellow moonlighting at my pediatrician’s office. He said I had bilateral ear infections but he also didn't like how fast my heart was beating. He took an EKG and sent it to children's in Minneapolis for further reading. He also told my mom to follow up on Friday (this was a Wednesday). So on Friday my mom brought me back and while my ears were doing better she asked my pediatrician about the EKG. He hadn't heard about it, and he immediately listened to my heart and then told my mom he needed to do more tests.
I was whisked out of the room for an EKG and chest X-ray. These new tests showed that in 48 short hours I had gone into heart failure. My pediatrician called children's heart clinic in Minneapolis and talked to Dr. Singh who told him that if it came on that suddenly I had to have congenital cardiomyopathy and the best thing to do was start me on medications and have my parents take me home for the weekend so they could spend as much time with me as possible, as I would likely die that weekend. If I didn't however that he would see me first thing Monday morning in his office.
Well I made it through the weekend and to his office and much to his surprise the diagnosis was a large Atrial Septal Defect. Medications were tried for two months and when they didn't work at 6 months my parents were faced with the decision to do traditional open heart surgery or do a procedure in the cath lab were a device known as the clam shell would be inserted into my hole and then opened effectively plugging the hole. The only problem was the clamshell wasn't FDA approved yet so my parents would have had to take me to Canada to get it done. They chose for me to have traditional OHS here and on June 1, 1990 Dr. Hellseth surgically corrected my ASD. I did well after that until I was 16 and began to get some tachycardia runs. Nothing horrible, but tachycardia nonetheless. I went into a surgery to have a PE tube implanted in my ear and I went into am abnormal rhythm on the table. Since then I have had numerous holter monitors and event monitor but they haven't helped because I am allergic to adhesive and can't keep them on.
After my pediatric cardiologist retired, I transferred my care to the adult congenital cardiology clinic at the University of. Minnesota and the EP there recommended that I have an EP study but also get an implanted holter monitor. This has been amazing for me. We have found that my heart randomly shoots up to over 200 and that's why I pass out, and why I get dizzy. This is thought to be because my sinus node was damaged during my initial open heart surgery. I now am on several cardiac meds and I have the implanted loop recorder/ holter monitor. I will also most likely be having a pacemaker implanted soon. All in all I am celebrating life and 24 years that dr's never thought I would get to live.
Cakes From Grace made a "24th Heart Day" cake for Brianna this passed May. I had the pleasure of meeting this brave warrior when delivering her cake. She is also a part of The Young Adults Heart Foundation. This is a group of young adult heart survivors that provide emotional support and guidance to other young adult heart patients. You can find out more about their foundation here. http://www.youngadultheart.org