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Ava has been diagnosed with Total anomalous pulmonary venous return (TAPVR)



After performing the echo on Ava's heart the cardiologist adjusted the diagnosis of her congenital heart defect. She does still have a heart defect but it is not Hypoplastic Left Heart Syndrome or HLHS. Total anomalous pulmonary venous return (TAPVR) is the new diagnosis. She has a second minor defect that is associated with this, it is pulmonary atresia.

TAPVR is a rare heart defect in which a child's pulmonary veins don't connect normally to the left atrium. Instead they're re-directed to the right atrium by way of an abnormal (anomalous) connection. In this defect the abnormal development of the pulmonary veins prevents oxygen-rich (red) blood from passing from the left atrium to the left ventricle and on to the body as it should. Instead, oxygen-rich (red) blood returns to the right side of the heart rather than the left atrium, mixing with the blue blood in the right atrium.

In TAPVR surgery is always needed, since oxygen-poor (blue) blood cannot meet the body's demands, either at rest or with activities.

The form of TAPVR that Ava has is "obstructed" this is the most sever form that this congenital heart defect takes. This is because besides the abnormal attachments of the pulmonary veins the same pulmonary veins are also obstructed. This requires emergency surgery.

Post surgery some babie may be sick enough to require a specialized life support system called ECMO (extracorporeal membrane oxygenation), an advanced technology that functions as a replacement for a critically ill child's heart and lungs.

The goal of surgery for TAPVR is to resotre normal red blood circulation to the left side of the heart. In the procedure, surgeons:

*re-direct the pulmonary veins to their proper connection at the left atrium

*tie-off the abnormal vessels that have developed as alternatives to normal flow

*deal with/correct any associated minor defects

After surgery the outlook varies from child to child, but the SUCCESS RATE IS HIGH. When the surgical repair for TAPVR is done early in infancy, a child's survival rate is VERY GOOD. Children with this defect, and surgical correction, will need lifelong monitoring (and possibly medication) to treat or prevent later problems that can occur.

Pulmonary atresia is a form of heart disease that occurs from birth (congenital heart disease), in which the pulmonary valve does not form properly. The pulmonary valve is an opening in the right side of the heart that regulates blood flow from the right ventricle (right side pumping chamber) to the lungs.

In pulmonary atresia, a solid sheet of tissue forms where the valve opening should be, and the valve stays closed. Because of this defect, blood from the right side of the heart cannot go to the lungs to pick up oxygen. A medicine called rostaglandin E1 is usually used to help the blood move (circulate) into the lungs. This medicine keeps a blood vessesl open between the pulmonary artery and aorta. The vessel is called a patent ductus arteriosus (PDA).

In Ava's case because she will already be having open heart surgery the doctors will repair or replace the valve, or place a tube between the right ventricle and the pulmonary (lung) arteries.

Ava is scheduled for surgery at 8 a.m. tomorrow morning (the 21st). Please continue to keep Ava, Cayla, and Cliff in your prayers. I will continue to post information when we have it. They appreciate your continued support, prayers, and possitive thoughts.

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