Hayden’s Birth
On December 29, 2008 we were blessed with the birth of our beautiful daughter Hayden Grace Smith. After a challenging pregnancy with several test and ultrasounds we were relieved to have a healthy little girl enter our lives with all ten fingers and ten toes. 
Within hours of Hayden’s birth a Pediatric Orthopedic Surgeon came into our room at the hospital and explained to us that our daughter was born with a condition called Proximal Focal Femoral Deficiency, or PFFD. We did not understand at the time that these four letters would affect our lives. Looking back on it now it truly was a surreal moment for both of us. P-F-F-D would be further defined to us by the surgeon as an extremely rare birth defect that involves the pelvis, particularly the hip bone, knee and the femur. We were relieved to learn that Hayden’s condition was the least severe of the four classifications given to PFFD. In Hayden’s case her right hip, knee, and femur were affected. An early estimate of mature length discrepancy if left untreated was ~9 inches (we were most recently told likely 6 inches). It was explained to us that Hayden’s condition could be corrected but it would take numerous surgeries to get her there and until then she would need to wear a shoe with a prosthetic lift. None of this was detected in the numerous ultrasounds taken during the pregnancy. We were shocked to find out the more severe cases often cannot be corrected by surgery and require amputation of the affected extremity.
At the time of Hayden’s diagnosis we just couldn’t comprehend how it would hugely affect our lives. In hind sight we are glad it was not detected before her birth as it would have weighed on our hearts greatly throughout the pregnancy. Looking back, being told all of this was somewhat like a dream. How could this be real? Why did this happen? It was heart wrenching to learn and come to terms with the very difficult path our precious baby girl had ahead of her. We often take for granted, and even expect to have a perfectly normal baby. It still is difficult to wrap our heads around the fact that Hayden was born with a condition that affects only a very small percentage of children born every year. With that said, we remind ourselves how fortunate and blessed we are to have been chosen to be mommy and daddy to the most beautiful and amazing child. She has brought so much happiness to us.
Finding a Doctor
We soon started seeking information from Doctors who had seen similar cases. We started with the Orthopedic doctor that came to us at the hospital. He was a former Shriner’s Doctor who had seen several kids with this condition…most of which were older than Hayden at the time they were treated. He was very patient with us and explained the long road that we would have ahead of us. Hayden would require one hip surgery, and at least three femur lengthening procedures where they would cut the femur bone in half, attach an external fixator and slowly stretch the leg to allow new bone to grow in the middle. He informed us there would likely be additional surgeries to correct or tweak things as time progressed. We valued his opinion but wanted to see what else was out there.
Fortunately for us we have a Shriner’s Hospital that is within 20 miles from our house. We had learned from our pediatrician that Shriner’s had experience in treating these cases. Hayden’s great grandpa was a Head Potentate of one of the Shriner groups where we are from, and from this we knew the great charitable things they do for children. We submitted our application to Shriner’s and were thrilled that we were accepted and that all of Hayden’s surgeries would be free of charge through Shriners. We soon had our first visit and for the first time ever saw other children in person that had similar conditions. It was very reassuring to know others were traveling down this same path as us. We no longer felt like the 1 in 200,000 statistic. We met with the Doctor at Shriners and he explained their procedures and results of their surgeries which was very similar to the initial Orthopedic Doctor we saw. When he was finished Rachel asked the Doctor,”What other questions should we be asking you?” He replies, “ You should ask me how many surgeries you think she will have.” “But you already told us, four,” Rachel responded. “Four planned surgeries, but you should account for at least 1 additional surgery for each of the four surgeries to make corrections,” he said. This made our hearts sink. Yes, 4 surgeries are too much for any child, but eight… how do you go into something like this with a Doctor that is planning on “make-up” surgeries? To say the least we had mixed feelings about all of this.
Dr. Paley
During this time Rachel had found families on Facebook that also had children with similar conditions. She kept coming across the name Dr. Paley. We soon learned he was an orthopedic surgeon in West Palm Beach Florida that specialized in cases of PFFD. With the urging of fellow PFFD families and some arm twisting of me by Rachel we decided to hear what he could offer to us. Rachel sent him an email and was surprised to receive a call from Dr. Paley on a Sunday night at 10pm his time. He took the time to discuss Hayden’s case with her and explained how he, by far, is the most experienced surgeon in the world when it comes to correcting limb discrepancies. He urged us to come down for a visit to see what could be done… so we did, with me still not convinced. After waiting in the lobby for ~6 hrs to get into our appointment we soon realized it was worth the wait. Dr. Paley and his staff were very informative and were able to reassure us our daughter had the best chances in their care. He would do things that other Doctors didn’t even consider doing that would clearly benefit Hayden. She would first require the Super Hip/Super Knee surgery where he would correct the angle her hip socket going into her pelvis and use some fibrous material from her hip to stabilize her knee. She would also require three femur lengthenings and possibly 1 orthroscopic surgery to fuse the growth plate on her unaffected leg. We met families while there who were told by other doctors that amputation was the only solution, only to have full corrective surgery later by Dr. Paley. He virtually wrote the books on the accepted corrective procedures that are being used by other Doctors around the world today. Leaving his office at 8pm at night it was no longer a question of “who should do Hayden’s surgeries” but “how will we make it work for Dr. Paley to care for Hayden”.
