Article wrote by Tylers Mom:
My little one, Tyler was born on Oct 10th, 2006 with Hypoplastic Left Heart Syndrome (hlhs). In a child with Hypoplastic Left Heart Syndrome, all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body) are severely underdeveloped.
The mitral and aortic valves are either completely "atretic" (closed), or they are very small. The left ventricle itself is tiny, and the first part of the aorta is very small, often only a few millimeters in diameter. This results in a situation where the left side of the heart is completely unable to support the circulation needed by the body's organs, though the right side of the heart (the side that delivers blood to the lungs) is typically normally developed. Blood returning from the lungs to the left atrium must pass through an atrial septal defect (ASD) to the right side of the heart. The right ventricle must then do a "double duty" of pumping blood both to the lungs (via the pulmonary artery) and out to the body (via a patent ductus arteriosus (PDA)).
The patent ductus arteriosus, a normal structure in the fetus, is often the only pathway through which blood can reach the body from the heart. When the ductus arteriosus begins to close, as it typically does in the first days of life, the blood flow to the body will severely diminish resulting in dangerously low blood flow to vital organs and leading to shock. Without treatment, Hypoplastic Left Heart Syndrome is uniformly fatal, often within the first hours or days of life.
Treatment for this condition is either heart transplant or 3 surgeries - the Norwood, Glenn, and Fontane. Tyler, though, has had a rough road for his 7 mths of life. For one, he has only gotten to be out of the hospital for 2 weeks of his life and then only to the Ronald McDonald House (Tyler has made the doctors too nervous to send us to our house which is 3 hours away) this was back in January and then for the month of April to our house (in which he ended up in TC Thompson Children's hospital for week starting with a positive blood culture that turned out to be staff eppy which is a contaminate, but in the meantime they discovered his liver was enlarged).
He has had multiple surgeries during this time (norwood, then a failed laproscopic nissen in which he coded and came back on his own to later code a week later and be put on ecmo, shunt revision due to clotting, fully opened nissen/g-tube, 5 heart catheters, the Glenn, and currently recovering at Vanderbilt from a pulminary artery banding between his BT shunt and Glenn shunt).
His glenn was supposed to be only 4 hours, but ended up being 11 due to taking 2 hours to cut through scar tissue, having to rebuild and unclog his innominate vein and opening up his left pulminary artery. He has had narrowing of the branches of his left pulminary artery and therefore ballooning of these multiple times.
If you would like to know more about Tyler, please visit his carepage at www.carepages.com carepage TylerCurtis.
On a personal note, Jan and I wish Tyler the very best, he is an adorable little baby with two of the most dedicated parents anyone could wish for. Good luck and God Bless.
Todd, Tyler & Tammy Sears
Incredible Baby
Tyler Curtis Sears
