Tuesday, June 11, 2013

A New Hope

One thing we've learned about HLHS is that it has only been treated for about 20-25 years.  Which means if I would have had this condition as a baby, I would not have survived.  SO MUCH has happened since then.  Today, approximately 80% of these babies survive.  And so much is continuing to happen.  

One thing our cardiologist told us is that heart transplants are not the best way to solve this problem.  Heart transplants only   last about 15 years and we don't want to start the clock ticking from day 1.  Plus, there's the problem of finding an infant heart.  So instead it's best to treat these babies with the three surgeries which should last them maybe 20 years or so until the heart wears out.  Then they will be a better candidate for a heart transplant.  But, more importantly, 20 years from now there may be far better options than heart transplant.  

I cam across this article today which I think foreshadows what may be in our future.  

Here is a video, if you aren't into reading.

And another article that Jeff found.

Amazing, right?  We are so blessed that this heart baby came to us at this time.  Who knows what the future holds for him?


  1. So would you guys have to live in Rochester to participate in the Mayo research? Could they fly you in?

    1. We wouldn't have to live there. We would just travel there for treatment. Depending on the specifics of the case study (which we don't know yet) they may pay for it or we may have to. We're still waiting to hear back from our cardiologist on this.