Miles’s Story

Site created on December 20, 2017

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place.


Miles was born on 10/1/2006 with a great murmur. We believed it was benign and would heal on his own, but was diagnosed with rare heart defect at 5 days old called truncus arteriosis. At 15 days he underwent open heart reconstruction. Dr. G was able to use pieces of own heart to create a functional heart sans pulmonary valve. We have always known and been upfront with Miles for needing additional surgeries. This surgery will place a pulmonary valve. This will not be his last surgery, but will start the clock for his next valve surgery as all valves wear out and will need replacement. 



 We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by riann taylor

It has been 14 weeks since Miles 2nd open heart surgery. Today was our 3 month post-op check-up with Dr. Daniels. 

Sitting in the echo room, watching the tech assess his heart always brings me back to his original diagnosis day more than 14 years ago. While I didn't fully know what was wrong, I knew his heart wasn't right. However, today, I watched the echo of my tall son who hardly fits on the echo bed. I could clearly see that his heart was right, that it was a whole functioning heart. It was beautiful.

In these past 98 days, his heart has continued to heal itself. It is actually getting smaller (to a normal size) and they are noticing normal changes in his heart circuitry as well. These are amazing results as we were told it could take 2-3 years for this. 

We will see cardiology annually now. 

We learned once there is a vaccine for his age group he should be able to recieve it pretty early in the process. 

Finally, we are excited to report this week he will be trying out for his middle school baseball team. 

Thank you for your continued support.

 

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