Titanium Rib Project (aka VEPTR)

This article is a wonderful article about the Titanium Rib Project and the operation that saved Kaedra's life:
http://www.aaos75th.org/stories/physician_story.htm?id=15

We first heard about the Titanium Rib Project right after Kaedra was born. (if you don't know Kaedra's story, you can catch up here) We were very blessed that she was moved to a hospital where the doctors were familiar with the project. About 4 years before Kaedra was born, a little girl was born with Jarcho Levin Syndrome at this same hospital and her mother had researched and found the rib project.  Because the doctors were acquainted with this other little girl, they immediately informed us about the Titanium Rib Project and started getting us ready for it.

Kaedra has benefited greatly from the titanium ribs.  (VEPTR=Verical Expanding Prosthetic Titanium Ribs) Before she had them she had little lung function on her left side.  Furthermore, although we didn't know it at the time, since her diaphragm didn't have a rib to attach to, her organs had all pushed up into the lung area further complicating her lung ability. Dr. Smith and Dr. Campbell discovered this about her organs and when they implanted the ribs they also reattached her diaphragm and moved her organs into the proper place.  Immediately after the surgery, Kaedra's lung capacity was increased by 60%. The person monitoring her lung function said he is always amazed at these surgeries and at the incredible results.

Right now Kaedra has to continually have surgeries to keep her growing and keep the lung cavity expanding so her lung can continue to grow.  There are new strides being made in the research where soon they will not have to do surgery to lengthen the rods - instead the expansion will be done with magnets.  They will still have to have major surgeries to replace the rods (when they are fully expanded and need the next size) but it will be wonderful not to have to have surgery and yet still get expanded!

Most "rib kids" have the surgery every 6 months. Our doctor is more conservative and doesn't believe that Kaedra needs the surgeries as often. We don't necessarily agree with him and are hoping to find a new doctor soon. At this time she hasn't had a surgery in a year and a half.  The pulmonologist that we just met in the hospital said that he agrees with us. The more surgeries she has now, the larger her lung area will be when they have to discontinue the expansions.

When Kaedra is fully grown (around 12 or so) they will no longer lengthen her rods.  Different doctors do different things. One thought is to fuse the spine.  Another is to leave the rods in.  Our doctor is not discussing this with us at this time. He says by the time she is that age they will probably have new ideas and theories. 

We are so very grateful for Dr. Smith and Dr. Campbell.  Dr. Smith died about 2 years ago and is sorely missed. Dr. Campbell has moved from the San Antonio hospital to Philadelphia.  They are wonderful men that have saved so many lives with their "out of the box" thinking.