The Heart of a Hero

Ethan's official diagnosis: Pulmonary Atresia with VSD, Double Outlet Right Ventricle, and Right Aortic Arch

Image and descriptions from Heart Baby Home

-Pulmonary atresia: [pulmonary=having to do with the lungs, atresia=without openings] a complete blockage of the pulmonary artery (which carries blood from the heart to the lungs) caused by a missing or fused-shut pulmonary valve.

-VSD (ventricular septal defect): [septum=wall between the chambers of the heart, ventricles=lower chambers of the heart] – holes in the inner walls of the heart allowing extra blood flow between the two lower chambers of the heart (ventricles). This causes the oxygen-rich and oxygen-poor blood to mix before leaving the heart.

-DORV (double outlet right ventricle): [outlet=passage for exit, ventricles=lower chambers of the heart] – both vessels (aorta & pulmonary artery) carrying blood away from the heart come out of the right ventricle. (Normally the aorta carries oxygen-rich blood from the left ventricle and the pulmonary artery carries oxygen-poor blood from the right ventricle).

-Out of all congenital cardiac malformations, it is estimated that Pulmonary Atresia with VSD occurs in 2.5-3.4% of the cases.

-Ethan's surgeon fully repaired his heart at 3 days old with the Rastelli procedure. This involved closing the VSD and surgically connecting a valved conduit between the right ventricle and pulmonary artery.

-Before his first open heart surgery Ethan's life was sustained by Prostaglandin, a drug that allowed his patent ductus arteriosus (PDA) to remain open. (This opening typically closes within hours after a baby's birth. Ethan's life depended on his not closing.)

-Ethan's conduit will not grow with him. Replacing the conduit was the main reason for his 2nd open heart surgery at 6 months old, and will be the reason for his next one.

-As much as I would like to say it is, Ethan's heart is not "fixed". He has the jugular vein of a cow sewn into his heart; there's nothing normal about that. Because he doesn't show any outward signs of a defective heart (he doesn't turn blue or fatigue easily), it can be easy to think that everything is OK.

-The major complication of Ethan's Rastelli repair was complete heart block. This means the top chambers (the atria) do not have a pathway to communicate with the bottom chambers (ventricles). A pacemaker was inserted when Ethan was 11 days old to bypass this. It senses the intrinsic beat of his atria, and sends a signal to tell his ventricles to follow. It does not tick, he can be around microwaves, and it's actually located in his abdomen.

-One half of a baby aspirin is all the medication it takes to keep Ethan's heart working like it should. However, he will be required to take prophylactic antibiotics before any dental treatments to help prevent subacute bacterial endocarditis (SBE).

-The successful Rastelli operation at 3 days old should provide Ethan with a near normal existence, well into his adult life!

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