A Lil' Boy's Journey to Live….

Riley was born 4/4/08 with Heterotaxy Syndrome (Asplenia Type) with CAVC (common AV canal), Pulmonary Atresia, Right Ventricle to Aorta, TAPVR (total anomolous pulmonary venous return)(Infradiaphragmatic-uno bstructed) and RRA s/p LMBTS (right aortic arch status post left modified BT shunt), patch augmentation of Pulmonary Artery bifurcation and TAPVR repair at 4 days old. He subsequently developed stenosis of each of his pulmonary veins and has undergone over a dozen Cardiac Catheterization with dilation/stent placement in all four pulmonary veins. He has also had a stent placed in the BT shunt. As of today Riley only has his RUPV and LLPV remaining. The other two have completely occluded. As of 11/2/09 Riley has been listed for a Bilateral Lung/Heart Transplant and requires continuous O2. He did have a failed “suterless repair” of his PV’s 7/14/08. Riley also had the Ladds procedure 1/6/09 along with placement of a G Tube.

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Comments on: "Riley’s DX… Up to this point…" (1)

  1. Unbelievable, the dx.’s these heart kiddos can have and yet they are just perfect to us!!! Even being in the Heart world, I must say most of Riley’s dx.’s are like a foreign language to me!!! Always praying for that perfect gift to come along soon!!! Heart hugs!!! Joy and Jilly

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