For Congenital Heart Defect Awareness Week, we are proud to share Jennifer DiBacco’s story. CHDs continue to be the #1 cause of death from birth defect in the nation. Jennifer shares her story to offer encouragement and hope to those who suffer from CHDs and to the families of those with CHDs.
My name is Jennifer DiBacco, and I was born in January 1988. Shortly after birth, in April 1988, I was diagnosed with Shone Complex – a rare form of congenital heart disease where there is a combination of four left-sided heart defects (obstructions), which include:
● Aortic coarctation (narrowing of the aorta)
● Obstruction below the aortic valve (subaortic obstruction- blockage below the valve)
● Mitral valve leaflets, which are thickened and stuck together, giving the valve a “parachute” shape
● And abnormalities of the mitral valve with stenosis (narrowing) and leaking (mitral regurgitation), which get worse over time.
I had an immediate need to have the coarctation of the aorta repaired. I had open-heart surgery when I was 3 months old at Nationwide Children’s Hospital in Columbus, Ohio. My parents were told that I would need additional surgeries as I got older.
Since my initial open-heart surgery at 3 months old, I have had three additional cardiac surgeries. In 2014, I had a mechanical mitral valve placed. In 2016, I had a cardiac pacemaker inserted. Just two years ago, in 2022, I had my most recent heart surgery, called a thoracic endovascular aortic repair (TEVAR) with a subclavian carotid artery bypass.
When I was 12 years old, I was diagnosed with a Dandy-Walker malformation, which is a cyst in the cerebellum that is sometimes associated with congenital coarctation on the aorta. At age 16, I had brain surgery at Nationwide Children’s hospital to place a ventral shut to keep the cyst from filling with fluid.
Today, I continue to receive Cardiac and Neurological care from Nationwide Children’s Hospital and Ohio State Wexner medical facilities. By the grace of God, and with the care and support of my amazing doctors, nurses, physical and occupational therapist, and my family, I am blessed to be here today. I am sharing my story and I support my local Heart Walk for myself and all the cardiac patients who can’t walk!