Taylor's Story


Name: Taylor
Born: June 8, 1996
Heart Condition: Transposition of the great arteries, Tricuspid atresia, Atrial Septal Defect, Ventricular Septal Defect, Coarctation of the Aorta


"Taylor's Story" - as told by his Mom, Pam


Taylor was born June 8, 1996. He was diagnosed at birth with Schmid-Fraccaro Syndrome.

At 26 weeks gestation he was diagnosed with multiple heart defects. Taylor's heart defects include transposition of the great arteries. A defect in which the two main arteries leaving the heart are reversed. The condition changes the way blood circulates through his body, leaving a shortage of oxygen in blood flowing from his heart to the rest of his body. -Tricuspid atresia in which the tricuspid valve is abnormally developed. The defect blocks blood flow from the right atrium to the right ventricle. -ASD (atrial septal defect) in which the wall that separates the upper heart chambers (atria) does not close completely. -VSD (ventricular septal defect) in which one or more holes in the wall that separates the right and left ventricles of the heart. -Coarctation of the aorta (narrowing of part of the aorta - the major artery leading out of the heart).

His first open heart surgery was performed when he was four hours old. The surgeon repaired the coarctation of his aorta. The narrowed part of the aorta was removed and the two free ends of the aorta were reconnected. At two months old he had his second open heart surgery (Damus-Kaye-Stansel) one in which the aorta and pulmonary artery were joined using a bovine patch. In 1998, he underwent his third open heart surgery (Glenn Procedure). The superior vena cava (the main vein that routes oxygen-poor blood from the upper half of the body) was connected to the pulmonary artery-which then routes blood to the lungs. In 1999, he underwent his fourth open heart surgery (Fontan Procedure). The inferior vena cava (the vein that routes oxygen-poor blood from the lower half of the body) was connected to the pulmonary artery-which then routes blood to the lungs.

In January of 2012, Taylor underwent his fifth open heart surgery in which a revision of the Damus-Kaye-Stansel procedure was performed. The surgeon also "tweaked" his pulmonic valve and placed permanent pacemaker wires for future placement of a pacemaker. Taylor has also undergone many "minor" procedures. Taylor participates in Special Olympics (bocce ball and volley ball), deer, bear, and turkey hunting, therapeutic horseback riding, Camp Odayin, the United Special Sportsman's Alliance (USSA), MN Special Hockey, and HopeKids. He also enjoys fishing, four-wheeling, and riding his dirt bike.

On June 27th Cakes From Grace delivered 100 cupcakes to Taylor's family for his High School Graduation party. We wish him good luck and lots of blessings on his many adventures ahead of him. Way to go Taylor!