Hi! My name is Alli.
I was born on May 12th, 2012 in seemingly perfect health. My parents and big sister Emma were so excited to meet me. On July 20th, 2012 my family took me to our family doctor for my regular 2-month well baby visit, and while there – my doctor heard a loud “whooshing” noise while listening to my heart. From there we went to see a cardiologist (a heart doctor) who ran an EKG* (electrocardiogram) and echo* (echocardiogram) on my heart.
My cardiologist discovered that I had a large VSD* and what appeared to be a small ASD* as well as aortic stenosis.* She explained what these were, and that while the aortic stenosis may be okay without intervention, the VSD and ASD would require open heart surgery, in the near future. Before we left her office, she had consulted with the cardiac team at C.S. Mott Children’s Hospital and I had a surgery date of August 1st, 2012.
I was 11 weeks old when I had surgery to repair my congenital heart defects. The VSD was quite large and required a Gortex patch between my ventricles. What appeared to be a small ASD was actually many tiny holes, which required my surgeon to cut out and repair with another gortex patch. It was determined that the aortic stenosis should be fine without any intervention once the holes were patched. My surgery lasted almost 4 hours, and I stayed in the hospital for 5 days. The typical stay for this type of surgery can be anywhere from 1-2 weeks, or longer if there are complications. I was lucky that I recovered so quickly and was able to go home with only a few daily medications.
I am now 2.5 years old. My heart repair was completely successful, and I have no medications or restrictions. I have no physical indicators of my defects or surgery, other than my scars. There are so many types of congenital heart defects. Many require multiple surgeries, medications, machines, and hospital stays. Many CHD’s are discovered in utero, and require surgery within a day or so after birth. Congenital heart defects are the most common birth defects in the United States. About 1 in 100 babies are born with a CHD. Approximately 40,000 babies are born in the U.S. with a CHD each year. CHD’s are the leading cause of infant deaths in the United States. Cardiovascular disease is the second leading cause of death for children 15 and younger. Up to 1.8 million Americans alive today have a CHD. More than 50% of all children born with a CHD will require at least 1 invasive surgery in their lifetime. Nearly twice as many children die from CHD’s than from all forms of childhood cancer combined. The number of adults living with CHD’s is increasing. It is now believed that the number of adults living with CHD’s is at least equal to, if not greater than, the number of children living with CHD’s. Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
Thank you for reading my story.
Alli “Gator” Sidel