Congenital Heart Defect (CHD) Awareness Week, February 7-14, 2023

Submitted by Barb Kohler, Steilacoom WA.

It’s that time of year when I like to bring attention to CHD Awareness Week. These defects are the leading cause of death in both infants and adults. Approximately 1% of births per year are affected by CHDs. These defects involve the inside walls of the heart, the valves of the heart or the large blood vessels which carry blood to and from the heart. Babies with critical CHD require immediate surgery. There is still no cure, but with the right medical treatment those with this defect can live long and healthy lives.

The subject is close to my own heart as my second grandson is one affected by CHDs. Fortunately, when he was born, the nurses recognized his critical condition immediately (problem breathing, pounding heart, weak pulse, very pale and blue skin color), and he was rushed to the Children’s Heart Hospital in Spokane. The doctors labeled and drew a picture of the five heart defects in this little heart the size of a walnut (Coarctation of the Aorta, Double Outlet Right Ventricle, Multiple Complex Ventricle Septum Defects, Atrial Septum Defect and Patent Ductus Arteriosis). Tubes and wires kept him alive until the doctors could do his first surgery. He has had major heart surgery every year of this three years of life. Each surgery took 5-7 hours.

Surgery 1 (Norwood Procedure) ensured that his blood flow was controlled enough to prevent damage to the heart and lungs and that enough blood was reaching the lungs to keep him alive until the second operation.

Surgery 2 (Glenn Procedure) the superior vena cava (large vein that carries deoxygenated blood from the upper body into the heart) was disconnected from the heart and attached to the pulmonary artery. After the deoxygenated blood from the upper body went to his lungs without passing through the heart.

Surgery 3 (Fontan Procedure) the inferior vena cava (large vein that carries deoxygenated blood from the lower body into the heart) was disconnected from the heart and attached to the pulmonary artery. Then all of the deoxygenated blood from his body went to the lungs without passing through the heart.

November, 2022, was his last open heart surgery. The doctors can do no more. His future includes a heart transplant (when he’s an adult). That is his future and many others who face a similar situation. However, there are still doctor visits and diagnostic tests and check-ups.

My grandson is quite the heart warrior! The banner at the hospital for each surgery would say, “Team Kellyn, Heart Warrior.” With all that he has been through, he is the happiest (he doesn’t know life any different) with his feeding tube hole (they joke it’s a second belly button) and all his medications. He recently returned to his preschool.

The family plays their theme song often to which they all sing and dance: Three Little Birds by Bob Marley. Throughout the song, the phrase they enjoy the most is “Don’t worry about a thing, ’cause every little thing gonna be all right.”