When our son Ethan was born, we were filled with joy. We had a tough pregnancy and just seeing his face healthy and strong filled us with excitement. Prior to being discharged, his pediatrician diagnosis was Proximal Femoral Focal Deficiency (short right femur) and advised us to go see an orthopedic surgeon at Scottish Rite Hospital.
We visited Scottish Rite Hospital for the first time when Ethan was three months old. They did various x-rays and at that point the orthopedic confirmed the diagnoses. We saw the same doctor again when Ethan was 6 months old. At this point the doctor told us we had 3 options; we could amputate, lengthen or rotate the foot even though he had great movement of his knee and ankle. We didn’t make any decisions but knew we needed to research and get a second opinion. We were then sent to orthotics where Ethan was casted for his first prosthetic (helper leg). Ethan’s discrepancy was 11 cm that a shoe lift would have not been the best option. When we got home that day we started researching and found Dr. Paley. A month later we went to our first Physical Therapy session and met Abby were we found out she was also looking into getting a second opinion with Dr. Paley. After meeting another child we decided that it was time to make a call. We sent an x-ray of Ethan’s leg to Dr. Paley and he told us make an appointment as soon as possible. We flew out to West Palm Beach on September of 2009.
While seated in the waiting room of Dr. Paley, we met numerous other families, coming from around the world; they relayed their experience of how Dr. Paley had changed their lives for the better. In the x-ray waiting room we met a teenage girl from Kansas that we will never forget. She told us about the procedure and how she would undergo lengthening all over again. That the pain she had endured was worth the outcome. We immediately knew we were at the right place and we were making a good decision by seeing Dr. Paley. We were at ease and found that our worries had disappeared and now we were just eager to meet Dr. Paley. Dr. Paley walked into our room with a sure look on his face and said I can fix him. He will need Superhip maybe Superkneee at age 2 and at age 4 his first lengthening. He will need 3 or 4 lengthening procedures given his growth but will have even legs before his 18th birthday. His diagnosis was PFFD but it’s not the worst case and therefore he is a great candidate for lengthening. As you can imagine we were super excited with the news. I had a list of questions and doubts but Dr. Paley answered every one with the same assurance.
In May 2010, when Ethan was a little over 2 years old, we nervously boarded a plane and flew from Dallas to West Palm Beach for Ethan’s first surgery. Dr. Paley was going to do Superhip and Superknee surgery. The hip would get corrected and secured and the knee would get an ACL to allow him to bend his knee. During the surgery, Dr. Paley placed a plate at his hip, removed the bowing of 90 degrees from his femur, and added the ACL to his knee before casting Ethan’s right leg. The surgery was successful and went as Dr. Paley had explained.
We were in Florida for a month before heading home with a removal spica cast. Ethan was in the spica cast for 3 months to secure his hip. He was back on his feet and walking within a month. He had Physical Therapy till the age of three. We were very impressed how fast he had recovered and how quick we was back at walking and playing like any normal 2 year old. Ethan had gained 2 cm from the surgery given to his femur that was bending 90 and then straighten. His discrepancy went from 11 cm to 9 cm.
During the 2 years prior to his first lengthening he was like any normal child. We went through three prosthetics and one shoe lift. His discrepancy kept decreasing and right before his first lengthening surgery his discrepancy was 8.3 cm.
On January of 2012 once again we hopped on a plane from Dallas to West Palm Beach, nervous but excited to start the journey that would change Ethan’s life. Dr. Paley told us that our goal would be 8 cm and hopefully we would make it without any complications. Ethan would have surgery January 9th and would probably be in a fixator for 6 months, three months of lengthening and three months of consolidation.
On the surgery day, Ethan’s surgery was 5 hours long but with recovery it was a total of 10 hours before we got to see him. To our surprise he woke up happy, in a little pain but nonetheless happy. He was in the hospital for three nights and up and walking the day after surgery. We were discharged on Thursday and our first physical therapy (PT) day was Friday. It was mostly orientation and meet and greet day. On Monday it would be our first PT session and turning day.
Ethan had land PT everyday 3 times a week; once with the therapist, water therapy at the pool and at home. We lengthened for 3 1/2 months. We started turning Monday, January 16th and turned until April 30th. At week 9 of turning, Ethan started having a hard time reaching 90 degrees and even 70 degrees and Dr. Paley decided to decrease the number of turns per day. We started alternating between 2 and 3 turns at week 9 then at week 12 we started alternating between 3 and 4 turns a day. In April, we had a minor setback. Ethan’s hip started to dislocate and we had surgery to add 3 new pins to secure the hip. Ethan, once again, did great with the surgery; he was so excited about his 4th pin site. This kid is amazing is all I can say! We continued to alternate between 3 and 4 turns a day until we reached our goal of 8cm.
On May 5th, we flew home to Dallas to allow for bone consolidation. Ethan once again amazed us, he consolidated very quickly and we were back to West Palm Beach for the removal of the fixator on July 9th. Removal surgery was one of the quickest surgeries we have experienced. We were sent home that day and started the recovery period. It’s amazing how quick the pin sites heal, by day 4 they had scabbed and looked healed. Ethan did not bear weight for 4 weeks but once Dr. Paley gave the green light he was up and at it again.
Dr. Paley and his staff are dedicated to their patients beyond the operating room. They are committed to being the supreme advocates at all cost. They are available at all hours of the day answering calls, replying to emails or texts. I’ve never experienced this type of relationship. Over the course of our treatment, there was no request, too great or too little, for Dr. Paley and his staff to become involved and to seek a positive resolution. For these things, my family and I are forever grateful.
Maria and Eddie
Red Oak, Texas