On the International Center for Limb Lengthening's website, CPT (Congenital pseudarthrosis of the tibia) is defined as "a shin bone fracture in children that has not healed." My fracture was discovered when I was 6 days old, but usually it appears before a child turns 2. CPT fractures do not heal on their own, and they take several surgeries or techniques to treat. Advances in technology, however, make it likely that the tibia will heal eventually. The most common technique is through performing a "cross-union surgery," where the surgeon will cut out the diseased bone, nail the healthy bone together internally, add bone graft tissue to the place in the bone that was cut, and if needed, place an external fixator.

 

I was diagnosed with CPT when I was 6 days old at Lexington Medical Center in South Carolina. The orthopedic specialist there strongly encouraged amputation because, at the time, cross-union surgeries didn't have high success rates. Fortunately, my parents declined this suggestion and sought out different doctors. We visited 3 more hospitals before we found Sinai, one of which was Shriners Children's Hospital in Greenville. They were a charity hospital, and it was there where I got specially made leg braces for several years as my bone developed.

 

At Sinai Hospital (in Baltimore, Maryland), my parents found Dr. John Herzenberg (now retired), who offered new hope. At Sinai, within the Rubin Institute for Advanced Orthopedics was the International Center for Limb Lengthening (on the second floor of the Schoeneman building). They were the ones who gave me my first external fixator in October 2010, and, when it resulted in a non-union after getting it off in January 2011, a second one that same summer. Luckily the second fixator worked and my tibia was healed, but fragile. Many CPT patients needed more tries and more methods to get it right. Still many more had to amputate in the end.

 

After union, I also got an internal rod next to my tibia and a leg brace to prevent future fractures. I needed the leg brace replaced every 6 months or so, which we took care of at Shriners and later at a more local prosthetic clinic called Hanger Clinic. This Hanger Clinic was the same chain that made a prosthetic tail for Winter the dolphin from Clearwater Marine Aquarium. I remember seeing posters about Winter in Hanger while waiting for my brace and being inspired to watch Dolphin Tale. Later we went down to see Winter at the aquarium on a family vacation, and I met the actors who played Hazel and Phoebe. I loved learning more about Winter and memorizing her posters every time I went to Hanger.

 

Eventually I stopped getting braces made at Hanger. I was supposed to wear a brace daily especially during risky activities (like running or jumping or biking) until I was 15 years old, but I didn't for some reason. I guess I was embarrassed at school when people asked me about it, and I got tired of explaining why it was there. For whatever reason I stopped wearing them early, and I think even now we got rid of all my old braces from when I was little. That is another reason I am lucky - I didn't even follow the treatment plan, but I never had a refracture. I don't know what we would have done then.

 

The rod replacements continued every 2 or 3 years, when my tibia would outgrow them, until I stopped growing and we found a good telescopic internal rod that fit just right. Apparently, when a patient with CPT reaches skeletal maturity, the bone fragility is no longer a concern. It is just while the bone is growing when it fractures easily and does not heal. Afterwards it's like normal. When I stopped growing, though, my doctor decided it was time to address the limb length discrepancy that almost 10 surgeries of CPT treatment had resulted in. That's when I had to choose between the PRECICE method, a newer technology that is completely internal, and the traditional external fixator. When they presented me with these two options, the PRECICE method involved staying in Baltimore for the entire duration of the lengthening. This is because an external magnet at the hospital is needed to extend a nail inside the tibia every day. With the PRECICE, I would also not be allowed to weight bear at all. With the external fixator, treatment would be more painful, and I would have to come see my surgeon every 2 weeks (so we drove from SC to Baltimore for each visit), but at least I would get to go to school and live at home. I was also allowed to bear weight on my right leg, which was an important detail, because I would later become a biking enthusiast, walk a few miles a day when it didn't hurt, and even complete part of the Grandfather Trail in NC with the external fixator on.

 

I started this blog when I began this limb lengthening journey to document every thought, feeling, loss, win, and perspective I gained during the 7-8 months I had the fixator. I hope that the things I took away from the experience and the knowledge I have on the other side are helpful for people just starting at the beginning. Whether you had CPT like me, or you are lengthening a limb with a fixator, I hope this helps give you hope or feel less isolated. I learned so many things along the way and broadened my perspective more than I ever thought I would with an experience like this, and I am glad to share it all with you now.