Riley Norton's Weblog: Riley's Handprint Memorial 2015

Saturday, October 24, 2015

Riley's Handprint Memorial 2015

I am truly humbled by all of the people who came over to participate in our memorial. It was healing for me to see that so many people are still thinking about Riley and to be surrounded by so much love on this especially painful anniversary. We made a time-lapse video to capture the transformation of our garage door. Watch it, and let your heart soar.

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Riley's Medical Condition

Riley was born with congenital heart defects that were detected shortly after birth. He has a condition called heterotaxy which means his internal organs are reversed. His heart is on the right side of his chest. He is also missing a spleen, a cardiac-related condition called asplenia syndrome. Riley's heart only has a single ventricle and a common valve. Before treatment, oxygen poor blood mixed with oxygenated blood causing severe cyanosis ("blueness").

There is no cure for Riley's disease but a three-stage palliative treatment is commonly performed. A few days after birth in April 2003 surgeons at UCSF performed the first stage, a BT Shunt. In May 2004 surgeons performed the Glenn Procedure. In March 2006 Riley underwent the Fontan Procedure, the third stage. Riley developed protein losing enteropathy and in March 2007 received a Fontan fenestration which failed, followed by the Fontan takedown in April 2007.

In 2014, Riley began developing arteriovenous malformations in his lungs. That's an indication that his Glenn circulation is not holding up. In October 2014, Riley went to Stanford for a 1.5 ventricle septation repair.