Did you know that 1 in 100 babies in the U.S. are born with a congenital heart defect? CHD's are the leading cause of infant death, and the #1 birth defect of live infants. The cause of most congenital heart defects are unknown, yet funding for research vastly lags behind childhood cancer and other genetic diseases.

Has your child been diagnosed with l-tga? I would love to talk with you. Please enjoy my blog and email me if you would like to join a network of parents of children with l-tga and other CHD's.




























Friday, May 27, 2011

Busy, Busy

I have been so busy lately, with work and running kids...that I haven't had much time on the computer lately.  The big kids' last day of school was yesterday and I got off from work early today, so now the computer is free and I thought I'd take a few minutes to catch up.

We leave to go to Stanford for another round of catheterization and an MRI.  I got the confirmation phone call today while I was driving home from work.  This is a huge relief since it is our 3rd appointment that has been rescheduled by them!  Well, that is, relief coupled with anxiety!  I am so anxious to know how Nicholas' heart has or has not changed since his pulmonary artery banding in December.  I am also nervous to know, because that means we may have to make the next step, which both scares me and leaves me very hopeful. 

I do feel really lucky, though.  A few days ago I had this patient, "Dr. Judy"....and she was a researcher at UC Davis.  She is really big on stem cell research.  Apparently her team is researching using FAT cells and turning those fat cells turn back into stem cells to then grow new cells, organs, body parts...Can you IMAGINE???  I think it is amazing to think of a scientist taking a sample of Nicholas' fat cells (not that he has that many!) and growing him a new heart!  She was fascinating to talk to and it really gave me hope that someday these CHD kids may have a new opportunity at a new heart, grown right from their own cells.  Amazing!   She also invited me to be an advocate for funding from the state legislature.  She asked for my story and contact information so she can notify me of the next time there is discussion about this sort of thing.  I can't imagine what scientific advances could be made if there was more CHD funding!

I will write again soon!

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