What does being a “Heart Hero” mean to you? To one of our Matthews Elementary families it means everything!
Connor, a student at Matthews Elementary, was born in June of 2015 and although he looked and seemed healthy, he was immediately diagnosed with a heart murmur. Through more testing, it was discovered that his murmur was actually a complex rare congenital heart defect called “Tetralogy of Fallot”. With this diagnosis the doctors determined he would need to have open heart surgery.
Tetralogy of Fallot features four defects in the heart:
- Ventricular Septal Defect or VSD, which is a hole in the wall between the lower chambers of the heart.
- Pulmonary Valve Stenosis, or tightening of the pulmonary valve causing an obstruction from the heart to the lungs.
- Overriding Aorta, which just means that the aorta lies over the hole in the lower chambers.
- Right Ventricular Hypertrophy, meaning the muscle surrounding the lower right chamber becomes overly thickened.
On November 11, 2015, at exactly 150 days old, Connor underwent open heart surgery. They placed Connor on a heart lung bypass machine, which provided blood and oxygen to the body while the doctors repaired Connor’s tiny little heart. The operation took approximately 6 hours, which felt like an eternity. They placed a synthetic material patch in the lower chamber of the heart to correct the VSD, in essence, building a wall between the lower chambers of his heart, allowing his heart to separate oxygenated blood from deoxygenated blood. They also placed a stint in his pulmonary valve in order to open the valve enough so that blood flow was no longer restricted. They also removed some of the thickened muscle tissue so that his heart could function easier. They then took him off the bypass machine and stitched him back up. Six days later, Connor got to come home!
Connor has no restrictions on activity at this time. However, he does have a heart murmur caused by the stint that is holding his pulmonary valve open. Connor visits his pediatric cardiologist annually and gets an echocardiogram, EKG and other heart function tests. At some point in his future, most likely when he is 9 or 10 years old, Connor will undergo another procedure to replace his pulmonary valve. We have hope that technology will improve enough in that time that the valve can be replace via a catheter procedure, rather than another open heart surgery. At this point, some patients still have to have open heart surgery to replace the valve because of their anatomy. In 5 more years, we hope all valve replacements can be done in the cath lab and a second open heart surgery can be avoided. Otherwise, Connor is expected to live a long and healthy life.