Cord Blood

When I was pregnant with Waverly, we decided to bank her cord blood knowing that research using the stem cells found in umbilical cord blood was beginning for kids with brain injuries like Wesley's.

In January 2016, I first contacted Duke about being part of their clinical trial using sibling cord blood for kids with cerebral palsy. 

After being #6 out of 5 kids for phase 1 of their trial and missing the age cut off by the time they did phase 2, we finally got the call last month to schedule for Wesley to receive an IV infusion of Waverly's cord blood through Duke's expanded access protocol (essentially following the same procedure as those in the trial but with more generous inclusion criteria and without it being free to us). This is not a miracle cure, but we are hopeful that we will see gains in the next year that we wouldn't have seen otherwise.  We want Wesley to be able to interact with the world and be independent within it to the best of his ability.  We're hopeful this will give him the chance to do more of that than he would otherwise.  From talking to the doctors and following other families' stories, some kids have seen significant improvements in their motor, vision, and communication skills while others have no measurable progress.  The research is just too new to have solid answers on why but we do know that it's better to do when kids are younger so we're stepping out and hoping for the best while knowing that we love our sweet boy, just as he is, no matter what. 

So today, after his initial clinic intake appointment, we had fun together at the beach and using this awesome wheelchair swing.  Tomorrow we check in to the hospital at 10am to have this 3+ year dream become reality.  Then we head home on Thursday and work to help his brain build new connections and make the most of the stem cells over the next year.

Here's a video of the doctor who runs the program here at Duke speaking at a conference about administering cord blood for kids with CP and kids with autism:  https://youtu.be/d4TD2eJV8bA




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