About Diego's Heart

Diego was born with multiple congenital heart defects (CHD):  L-loop Transposition of the Great Arteries (L-TGA), Ventricular Septal Defect (VSD), and Ebstein's Anomaly of the Tricuspid Valve resulting in moderate regurgitation with right ventricle dilation.  L-TGA is a rare and complex heart defect.  Only 0.5 percent of all people with heart defects have L-TGA which means there are approximately 5,000 people in the USA with this defect. 

Diego will face multiple open heart surgeries throughout his lifetime.  Due to the rare and complex nature of Diego’s heart, his surgeries will be performed at Children’s Hospital Boston with Dr. del Nido.  His first surgery, on Tuesday, August 28, 2012, was the pulmonary artery banding (PA Band) with the purpose of having a positive benefit on his tricuspid valve and preparing the left ventricle (that is on Diego’s right side) for the anatomic repair called the Double Switch.  After the PA Band surgery, Diego was monitored to determine his left ventricle progress.  He is currently scheduled for the Double Switch surgery on Wednesday, July 31, 2013.  At some point in his future there is also the possibility that Diego’s tricuspid valve will need to be replaced with an artificial valve.  Diego’s complete surgical path remains uncertain; therefore, we are simply taking it one step at a time. 

Diego prepared an award winning speech for the 2012 TPS Speech Arts Festival. Please listen to his speech for a basic understanding of how his heart defect is different from that of a normal heart.  I am amazed at Diego's ability to comprehend the complexity of his heart defect and his innate ability to speak in public.  His speech begins 30 seconds into the video.

 
A wonderful friend of mine set up Diego’s Heart Fund account.  All donations made will go directly into this account and will only assist with the financial expenses related to Diego’s CHD.  There are many challenges when you have a loved one with a rare disease.  It involves perseverance to find professionals, community leaders and organizations that are focused on advanced research to provide patients with the best current and long term quality of life.  It requires a revolving door of financial resources to assist with medical expenses, travel expenses and supporting innovative research.  It truly makes a difference to be surrounded by a caring community of friends and family.  Thank you for your acts of kindness, words of encouragement, donations and prayers throughout Diego’s heart journey.