Our baby, Jasmine, was diagnosed at 5 days old with a rare condition known as Congenital Pseudarthosis of the Left Tibia and Fibula (CPT). She was diagnosed by a German Professor in the UAE. Since that very young age (for the past 18 months) her left leg has been in either a cast (for approximately the first 8 months), followed by various Braces, all of which designed to prevent the Left Bowed Tibia from breaking. She has always been a very happy baby. She loves people and is always smiling, despite being in the hospital at least once every fortnight since her birth. People always comment on how much of a happy baby she is. She has never let the brace slow her down and has always adapted to new braces. She however has never walked alone. We long to see her take her first steps but she never gives up and use to walk while holding onto furniture or a walker. In July 2012, the professor told us that our baby required surgery ASAP, which he had a +90% success rate, his only failures being 2 cases where the patients had already had breaks through failed treatment elsewhere. We had explained to the Professor that we did not have the money readily at hand to pay for the operation and would have to raise a loan and go into further debt. He told us we should do everything possible to get the funds as Jasmine's leg could break at any time and then things would be harder to fix. We borrowed the money to ensure that our baby girl could have the operation scheduled by the Professor. We truly believed that this would prevent her bone from breaking and we remained hopeful.
Our insurance would never cover Jasmine since her condition is congenital so since birth we have been paying for all doctor, hospital, X-rays, MRIs, blood tests, casts, braces (changed every 3 months) and most recently her surgery bills. We are obviously in a lot of debt already.
The operation appeared to go well, though Jasmine did have to have a blood transfusion. However, three days later our strong Jasmine was determined to sit up and she was released from hospital a week later but she did have to spend a month sitting with her leg upright. She obviously doesn't understand why she has to sit still and why she cannot move around to play with other children. We try our best though to keep her entertained and she's never stopped smiling all through this. We just hope that all of what she has been through doesn't change her amazing character. Her smile is seriously medicine to us all :) Unfortunately, 6 weeks later on the 27th Sep, Jasmine indicated/complained of a sore/painful leg which was confirmed by A and E as broken. Jasmines leg was then put back into a cast. The surgery had therefore failed. During a scheduled paediatric visit the following week (4th October, 2012), the cast was removed, as Jasmine seemed in pain and the fracture had worsened with a bone now protruding through the surgery wound/skin.
Since then, the professor has behaved very unprofessional. He only seemed to care about the financial side of things when we wanted to discuss her prognosis and what we should do to take care of the bone being outside? We were then extremely shocked when he said that he told us that the first surgery was only a trial and had a 50/50 chance as opposed to the +90% success rate. We felt as if all the hope we were given was false - if it was only a 50% chance then why put her through all that and surely then it would have a 50% chance to heal without surgery? Basically he then told us to go, with total disregard to Jasmine’s current status and the bone still protruding in her broken leg.
Thankfully one Dr in Abu Dhabi and another in Dubai have been very helpful and kind to Jasmine and both have been in contact with the Dr in Miami.
She now requires quite an immense surgery to remove part of the infected bone, resect the pseudarthrosis area, apply a growing rod and BMP to help support the bone and a fixator for approx 6 months to lengthen her leg. Sine the bone is outside, she needs the surgery now due to the risks of the infection spreading. Also the longer her leg stays in the current state, the less likely the surgery will work and the more likely she will develop problems with her foot, ankle, knee, muscles etc.