Jacob’s Journey With PFFD

Hello and thank you for visiting Ourherojacob.com. Jacob has been undergoing super-hip surgeries and lengthenings with Dr. Paley since he was two years of age. Jacob is now ten and currently undergoing his fifth surgery and second lengthening at Paley Advanced Limb Lengthening Institute in West Palm Beach, Florida. As Jacob’s parents we found that many of our friends and family simply did not understand the scope of Jacob’s Journey to have two fully functional, long legs. This site is our attempt to share Jacob’s experience with our friends and family, and anyone that might also have a child in a similar circumstance.

Ourherojacob.com is the name we chose for this site because, our son is our hero. He has already endured five surgeries in the last ten years. Jacob has an amazing spirit and determination that we wanted to share his story with you.

JACOB’S BIRTH
Our son Jacob Katz was born on the 30th of April 2001. After 12 hours of labor our healthy baby boy was born. Moments later the doctor walked over to me and said “I don’t want you to be alarmed but one of your son’s legs is shorter than the other”. I was a little surprised but I was so elated to see my beautiful bundle of joy that it didn’t really sink in. All I cared about was that he was a healthy baby boy smiling up at me.

PROGNOSIS
A few hours later our newborn baby Jacob had X-rays on his leg. The diagnosis- PFFD-Proximal Femoral Focal Deficiency. I had no idea what these long words meant but we would soon find out. My husband and I saw many doctors and were at first discouraged that there did not seem to be an abundance of expertise on this condition.

We finally found an orthopedic surgeon named Dr. Dror Paley that specialized in PFFD patients, originally located in Baltimore and now relocated to St. Mary’s Hospital in West Palm Beach, Florida. We learned that PFFD is a condition where a baby is born with one leg shorter than the other. In Jacob’s case his left femur never grew as long as his right femur while in the womb. PFFD is a condition that affects 1 in 200,000 babies and there is no known cause. We had tears running down our faces as we realized the impact of what this would mean for our son Jacob.

WORLD RENOWNED ORTHOPEDIC SURGEON DR. PALEY
We immediately made contact with Dr. Paley and sent Jacob’s x-rays to him. We were living in Los Angeles at the time and Dr. Paley’s Institute was in Baltimore, Maryland. The prognosis without treatment would be that Jacob would have one leg 30 cm (11.8 in) shorter than the other by adulthood if nothing were done. Dr. Paley then added that not only did Jacob have a shorter femur but his hip was not fully formed. He called it a congenital PFFD type B ( 1 in 300,000 babies are born with this type condition). This is where the hip is not fully formed as well as the shorter femur. The treatment for the regular PFFD condition is to lengthen Jacob’s leg up to 3 inches at a time requiring surgeries and stretching his femur bone with an external fixator and intensive physical therapy every day for three to four months while wearing the fixator. However, before we could begin down the long road of limb lengthening, Jacob would have to have a super-hip surgery to stabilize his hip. Otherwise, the risks of complications, such as dislocations, and fractures, could outweigh the benefits. Dr. Paley was the only one in the world that had the confidence and the track record to take Jacob as a patient.

SUPER-HIP SURGERY
It was initially hoped that there would be one super-hip surgery to add a rod into his hip to stabilize it and allow bone to grow. The hard reality was that Jacob had not one but three super hip surgeries, one at age two, age three and another at age four. Dr. Paley’s goal has always been to have a fully functioning ossified hip and socket before he would continue with a lengthening. Every time Jacob would go into that surgery room we would give him big kisses and hugs. We would watch Jacob’s brave little face as he would go under and then we would pray for the next four hours for God to return our son back to us. We trusted Dr. Paley  that until his hip was stable he would not move on to the lengthenings. It was the right decision and now Jacob has a wonderful stable hip and ready for lengthenings on his femur.

LIMB LENGTHENING 2007

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Jacob was six years old when he was ready for his first lengthening procedure at the Rubin Institute for Advanced Orthopedics. During the surgery performed by Dr. Paley, Jacob’s femur bone was broken and an external fixator was added to Jacob’s leg. Each day he had physical therapy for 2 hours, 1 hour of land and 1 hour of pool therapy for 4 months. Four times a day we would turn screws attached to the external fixator to pull the bone apart so new bone would  grow in between. In four months Jacob had gained 3 inches of new bone growth. He will have this procedure again at least 2 more times, possibly 3 in his life between the ages of eight and sixteen. While we know that we’ve made the right choice for Jacob, it doesn’t necessarily make it easy. Each lengthening procedure will take us away from home for months and be extremely demanding, physically, emotionally, and financially.

LIMB LENGTHENING 2011

Our limb lengthening journey began early June 2007 and Jacob is presently completing his second limb lengthening  at the Paley Advanced Limb Lengthening Institute in West Palm Beach Florida, February-June 2011. Please see the pages and posts for the most recent updates.

 

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