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At just 2 days old (still in the hospital), I began experiencing significant respiratory problems and turned a disturbing shade of grey. Mommy, Daddy, and the doctors were all concerned, so an echo was sent to Rush Memorial Hospital in Chicago.
Mommy and Daddy were told it could be my heart, but were obviously hoping for otherwise. The results indicated that my heart was fine; however, my condition continued to worsen. Two hours later, I was life-flighted to Comer Children’s Hospital (University of Chicago) in Chicago. An hour into my arrival at Comer’s, I was diagnosed by the cardiology team as having Interrupted Aortic Arch (IAA), Type C (most rare type of this heart defect — 7 percent of those who have IAA). I also had two holes in my heart (ASD & VSD).
To say the least, my family was devastated.
They were also told that my heart condition would require multiple open heart surgeries and heart catheterizations over the course of my life; I knew I had to stay strong for them.
My first reconstructive heart surgery (Norwood procedure) occurred on June 1st, 2009 when I was just 7 days old. The procedure lasted over 10 hours, during which I was placed on bypass. I pulled through this extensive surgery, and became known on the Pediatric Intensive Care Unit (PICU) floor as “The Rockstar.” Genetic testing confirmed that I had a deletion in the 22nd chromosome, known as Velo-Cardio-Facial-Syndrome (VCFS). Unbeknownst to many, this is the second most prevalent genetic syndrome after Down”s. Its key features include heart anomalies, physical and cognitive delays, possible mild mental retardation, calcium deficiencies, and 182 other possibilities. I later came home when I was 5 weeks old on July 2nd, 2009.
Over the course of the next 6 months, I was hospitalized 9 times due to oxygen desaturations and severe feeding issues. With my condition slowly deteriorating, my second open heart surgery was scheduled for December 1st, 2009. During this surgery I had minor complications, leaving my surgeon, Dr. Bassem Mora, to choose an alternate route. Thus, a Glen procedure was conducted that day. Mommy and Daddy were told a third heart surgery would take place at approximately 2 years of age.
At 14 months old, I had a stent placed in one of my pulmonary arteries, as this artery had grown considerably constricted due to scar tissue etc. It was a successful placement! I am now 16 months old and am currently being treated as a hypoplastic left heart patient; however, I do in fact have a 2-ventricle physiology. I am currently taking 6 medications and am on a Pulse-Ox machine in my home. Overall, I am making strides both physically and developmentally, with the help of both speech therapy and physical therapy.
My parents are oh-so proud!