Atlas’s Story

Site created on December 7, 2020

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.  

Newest Update

August 22, 2023

Journal entry by Moriah Hein —

Today Atlas had his 3 week post surgery checkup here with his cardiologist in Missoula.  Atlas got to see his doctor, nurse and echo tech today and show them his big scar and how well it’s healing.  He was a champ for his ECG, super still just like we like him to be.  Dr Sticka talked with us about the surgery and did his exam which was quite different than it normally is.  Then he got to watch Bluey while Katherine did his echo and we chatted about our Seattle experience.  
The news from the doc is that atlas’s surgery went spectacularly well and his outlook is really good.  If all goes according to plan, he will likely need his pulmonary valve replaced in his teenage years through another open heart surgery, but after that there are pretty good odds that most of his future heart intervention will be through cath procedures.  
It all felt kind of full circle today.  A little bit of closure from this crazy process and time in our lives.  
Today the closing statement on his Echo report read “the patient has undergone a Ross procedure with no residual aortic stenosis!”  He’s always had aortic stenosis.  And now he doesn’t.  
As we walked out of the office it felt like the end of one of those cheesy football movies where the star player walks off the field after the winning game.  No one was actually there clapping as we walked out of the office, but this enormous moment was happening and inside my heart was exploding.  I wanted to shout it from the rooftops!  
ATLAS NO LONGER HAS AORTIC STENOSIS!!
Read More of the journal titled "August 22, 2023"
  • A little post surgery bald spot.
    A little post surgery bald spot.
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