Jacob’s Journey With PFFD

 

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Our son Jacob was born with a short leg in 2001. He has been undergoing surgeries to lengthen his leg for the last eleven years with world-renowned orthopedic surgeon Dr. Paley.

Jacob is now thirteen and in May 2014, Jacob underwent surgery to stabilize his hip and knee at Paley Advanced Limb Lengthening Institute in West Palm Beach, Florida. This is in preparation for his third limb lengthening in 2015.

As Jacob’s parents we wanted to share 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 everyone else who is interested in limb lengthening.

Jacob is our hero. He has an amazing spirit and determination to have two long legs. This is his story.

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 in this area.

After scouring the internet. We discovered an orthopedic surgeon by the name of Dr. Dror Paley that specialized in PFFD. Originally located in Baltimore and now has his own Limb Lengthening Institute at St. Mary’s Hospital, 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 added that not only did Jacob have a shorter femur but also his hip was not fully formed. He called it a congenital PFFD type B ( 1 in 300,000 babies are born with this type of 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 mutiple surgeries (until the age of 17), and stretching his femur bone with an external fixator and intensive physical therapy every day for  four months while wearing the fixator. Then another four months of consolidation (hardening the bone). 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, would 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 would need three super hip surgeries, one at ages two, three and five.

Dr. Paley’s goal was always to have a fully functioning ossified hip and socket before he would continue with lengthening.  We trusted Dr. Paley that until his hip was stable he would not move on to the lengthenings. It was the right decision and Jacob had a stable hip and able to udergo lengthenings on his femur.

LIMB LENGTHENING 2007

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 2-3 more times, possibly 3  between the ages of nine and sixteen.

LIMB LENGTHENING 2011

Jacob completing his second limb lengthening  at the Paley Advanced Limb Lengthening Institute in West Palm Beach Florida, February-June 2011. This time Jacob had an external fixator to lengthen his femur and a fixator on his lower leg to straighten the tibia. See the picture on the top right of this page. The lengthening was a wonderful success and again Jacob gained just over 3 inches of new bone growth. Of course Jacob continues to grow so we will be back in 2014 when Jacob is 13 years old.

HIP SURGERY  2014 

We are currently in West Palm Beach May-August 2014, to stabilize the hip and correct a bow knee in anticipation for further lengthening in 2015. We are excited because next year Jacob will be a candidate for the internal rod lengthening instead of the external fixator.

Please feel free to browse the sight for links, info and pictures of Jacob’s Journey or email me Rachel Katz at: naturallytreated@earthlink.net

 

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