Over the past 7 years, we have had numerous discussions with patients, parents, and other family members about their journeys with Clubfoot (CTEV). It is not an easy condition to deal with per patient feedback yet all literature refers to it as easily fixable and long-term side effects are rare... We have discovered quite the opposite online, it is hard for these patients, tougher than many can think of or know about. Like in any other condition there are always those mild cases who do not experience the same as those who have more symptoms and problems down the road. Understanding is sometimes lacking even between people dealing with the same condition as was evident in our journey.
Usually, it is a huge disappointment, an eye-opener, and people deal with a lot of feelings of guilt, grief even. Naturally, they are outraged if the information was withheld or deliberately delayed. Symptoms they reported were ignored or diminished and their requests for further testing brushed off or denied.
For patients like these, there is no easy fix, no words that can make it better. One mother living way south in Texas discovered years down the line that her son had an underlying condition that is making treatment unsuccessful. They have had numerous procedures and castings and braces and it all failed by 8 years old. She says she would have delayed or never proceeded with so many interventions had she known or been told that CTEV is a lifelong disorder.
They trusted that doctors know better, but now regret that period of blind faith so to speak. They have no more surgical options left for the future. Everything that could be done has been done, plus it failed to correct the feet. The underlying condition was never mentioned, never addressed with them and their boy at 18 cannot pursue a career in sports or even play sports.
Some adult patients have discovered their co-morbidities in their 30's and 40's. Some are diagnosed with Spina Bifida as adults and to them, it comes as a huge shock!. They cannot believe that they lived with the condition for years and no one ever told them anything! It is a sad thing that they regret not knowing.