amaya at lake

amaya at lake

Friday, December 3, 2010

Where to Begin...

     By this point most of you know that Amaya has PFFD (proximal femoral focal deficiency) it is also known as CFD (congenital femoral deficiency).  We discovered she had it shortly after birth.  In fact the first day she was born we heard a "pop" while her uncle held her. We weren't quite sure what to think of it.  After several follow up visits with nurses, doctors and an orthopedic nurse we finally got in to see a specialist.  An orthopedic surgeon at Kaiser in Fontana named Dr. Hurley.  After several ultrasounds she believed that Amaya had a dislocated hip (possible hip dysplasia) and sent us home with a brace.  Once Amaya  got a bit older and she was able to see more clearly in x-ray's what was going on we found out the whole scope of the situation.  Dr. Hurley told us that Amaya had PFFD (we had never heard of it before then) and that she would need several surgeries throughout her life beginning as early as age one.  Amaya's left femur is 4 cm shorter than the right one and grows at a slightly slower percentage.
     We decided to get a second opinion and got in to see Dr. Kishan at Loma Linda Children's Hospital. He confirmed the diagnosis, but had a more "laid back" approach to treatment.  He took a wait and see approach, and only saw Amaya once a year.  Amaya continued to wear a one inch lift on her shoe and then began to wear a neoprene  knee brace to help stabilize her knee. Often children with PFFD don't have the ligaments in the knee.  Because of this Amaya's knee dislocates frequently.  After a year Dr. Kishan suggested a sturdier knee brace to help keep the knee aligned. He was afraid of the damage that her knee would suffer from constant dislocating.  He suggested she have ligaments implanted at age ten and then later do a lengthening surgery or possibly stunt the growth of the right leg to allow the left leg to "catch up" or a combination of both procedures.  Amaya is currently wearing this knee brace as well as her one inch shoe lift.     
     In the summer we received a referral letter from her primary doctor to go see Dr. Nelson at Loma Linda, Dr. Kishan was leaving Loma Linda. We met Dr. Nelson, an orthopedic surgeon, who had been living in Santo Domingo, Dominican Republic for the past five years. He was serving as the medical director of the Cure International children's hospital.  He was very familiar with Amaya's condition and immediately began doing some calculations. He predicted the leg discrepancy to be closer to 8cm (about 5 inches) once she was done growing.  He recommended we do a superhip, superknee surgery then follow up with a lengthening surgery.  He came to Loma Linda to work as a faculty and surgeon. We were impressed with his knowledge, confidence and plan for Amaya.  He was very happy with her bone structure and was quite confident that he could correct her leg in two surgeries. 
     We met with Dr. Nelson in October and he recommended scheduling the surgery as soon as possible as recovery takes about three months and since his surgeries are booked three months in advanced. The soonest appointment we could get was January.  He recommends doing the lengthening six months after the superhip, superknee. But, as of now we are not sure when that will take place.
So, that is where we stand for now. 

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