Hi. I'm Elliott. I was born in Maoming, China in 2008 and immigrated to the United States when I was adopted at the age 3.5 years. I was born with complex congenital heart disease (CHD), including Transposition of the Great Arteries (TGA), which is a serious, rare complex heart problem where the two main arteries leaving the heart are reversed. My heart condition was even more rare as I was diagnosed in the U.S. with a double transposition; TGA and transposition of the atrial chambers. I also had a large hole between my left and right ventricles, known as Double Outlet Right Ventricle (DORV). In addition, I also suffered from pulmonary atresia, which is a birth defect where the valve that controls blood flow from the heart to the lungs doesn't form at all and the blood has trouble flowing to the lungs to pick up oxygen supply for the body. Given the complexity of all my heart defects, China was unable to perform my surgery, so my only hope of surviving this rare condition was to get adopted by a family who could get me the help I needed to repair my heart.
My parents brought me to the #1 Children's Hospital in the U.S. (Boston Children's Hospital) to have my open heart surgery. After a very lengthy and complicated surgery, I spent 3-months in the Cardiac ICU, with my chances of survival only being 50%. My time in the ICU was touch and go on a daily basis, including two runs on ECMO (a last chance life support machine), and a 20-minute code blue. You can watch my first video produced by Boston Children's Hospital on YouTube: https://www.youtube.com/watch?v=zTo5QcFErv4&t=11s
After 90-days in the cardiac ICU, my parents were told I only had a 10% chance of survival after my code blue. I started to bleed during my second round on ECMO, so they had to take me off life support. Since my heart was so weak from the heart surgery and the additional weakening from the code blue, the doctors were expecting my heart to not work on its own, and that I would peacefully expire. Much to everyone's surprise, my heart started working on its own and 2 weeks later I was discharged from the hospital and I finally was able to go home to start my life with my new family. Unfortunately, my story doesn't end here. 18-months after my initial surgery, I was on anti-coagulation therapy and I experienced some rare (and near fatal) complications. Specifically, I had a subdural hematoma that was misdiagnosed at my local hospital in Atlanta that resulted in a brain bleed, and required emergency neurosurgery to save my life. I suffered additional complications with a MRSA infection in my brain that also required another brain surgery. I was ultimately air-transferred from Atlanta to Boston Children's Hospital, where I underwent a total of seven (7) more brain surgeries to save my life.
Let's now fast forward 10-years. I'm now 14-years old and attending eighth grade. I have been living a normal life and my heart has been functioning very well. Unfortunately, I started experiencing pain in my lower right back (primarily at nighttime), so my parents were concerned something serious was happening to me again. After ruling out cardiac and orthopedic causes, I was diagnosed with a rare tumor (called a paraganglioma) in my retroperitoneal cavity (in my abdomen). Paragangliomas are rare neuroendocrine tumors that secrete catecholamines, including adrenalin. ~2 out of every 1 million people will be diagnosed with a paraganglioma, but they are typically found in adults between the ages of 30-50 years, which makes my paraganglioma extremely rare (for kids). In fact, I am the 4th case reported worldwide of a paraganglioma found in a complex CHD patient (and it was Boston Children's first case). Once again, I went back to Boston to have my tumor surgically removed.
After removing the tumor, I went into severe acute heart failure. The doctor's believed that my heart became dependent upon the adrenalin being secreted from the tumor and when the tumor was removed, my heart no longer had the adrenalin to help it pump. However, the heart failure medications were not working (as expected), so the Cardiology team decided to perform an exploratory cardiac catherization to look directly into my heart to see if they could identify the underlying problem. Much to their surprise, they quickly realized that my pulmonary artery was severely obstructed/narrowed. The Cath Lab was was able to intervene and they inserted four (4) stents into my pulmonary artery, as well as replacing my aortic valve during the procedure, which gave me immediate improvement. In a strange way, my tumor actually saved my life. If the doctor's never found my tumor, and if I didn't go into heart failure after the tumor was removed, my doctor's never would have found the obstruction in my pulmonary artery, which could have resulted in sudden death at any point in time.
So far, my life has been saved four times by Boston Children's Hospital. Without the specialized care I received in Boston, I would not be here today to share my story with you. I want to be involved in One Less Broken Heart, so I can help other kids "like me" get saved too.
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