Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement.
Atlas was born with a congenital heart defect (CHD) called Aortic Valvular Stenosis with a bicuspid valve. This means his aortic valve that is supposed to have 3 leaflets only has 2, and those two leaflets are thick and rigid and don't function like they should creating a smaller area for the blood to flow through. This causes the left ventricle to have to use extra force to get the blood through the Aortic Valve. The extra pressure created by this force puts strain on his heart muscle causing it to thicken, among other problems.
A cardiac catheter procedure ( they put a catheter through your femoral artery and feed it up to the heart, into the valve and expand a balloon to open the space to allow for better flow) can be used to treat his condition. Atlas has had 3 of these at Seattle Children's when he was 1 month, 4 months and 23 months old. The last one on 12/4/20 didn't give him any relief, so we need to do something different.
His next step is something called the Ross Procedure. This is an open heart surgery where they will switch the position of his pulmonary valve and put it in place of his faulty aortic valve and then use a cadaver valve in place of his old pulmonary valve. If everything goes as expected it will be several years before re-intervention which would be amazing.
I'm still learning what this process will look like and how our family will manage it. As I gather information and meet with providers I will update this site.