From Trauma to Trust
The first ultrasound images of unborn Ayden were startling. The high-tech scan showed a developing baby boy with heartbreaking leg deformities: only four toes on a left club foot, three on the right; a shortened tibia and a missing fibula. The diagnosis: congenital fibular hemimelia.
Difficult though the findings of that ultrasound were, the forewarning of Ayden’s condition allowed his parents and the medical team at Phoenix Children’s Hospital to prepare for the care he would need from the moment of birth. Just six days after Ayden was born, a Phoenix Children's pediatric orthopedic surgeon explained the hard facts. To have a chance to walk, Ayden’s right foot would have to be amputated. Without the operation, there was a 90 percent chance Ayden would never be able to take a step, and would still face yearly surgeries as his shortened tibia grew.
Mom and Dad struggled, with the agony of such a decision. How would an amputation of Ayden’s foot actually help their son walk? What if all it did was leave him maimed for life? PCH encouraged them to seek a second opinion.
Another surgeon agreed with the treatment recommendations. Mom and Dad were impressed by PCH’s specialized knowledge of his condition, but in the end it was the surgeon’s compassion and forthrightness that led them to trust his recommendation to amputate. Mom recalled, “He didn’t use thick medical terms. He remained humble instead of superior. He never interrupted us. It was very comforting.”
“It felt like...the entire staff at PCH caringly held our hands throughout the ordeal. It was a big thing. To us they are all angels.” - Ayden's mom
Tough Beginning, Tougher Kid
Even at his tender age, Ayden sometimes wonders why he doesn’t have a foot or whether he will ever have a full set of toes. These are not easy questions to cope with. At age five, Ayden has already undergone more medical procedures than most adults in their lifetime. His condition requires ongoing treatments plus replacement limb prostheses as he grows. Next up is surgery on not one, but both knees.
On the positive side, Ayden has progressed to being able to play alongside his kindergarten classmates and experience their acceptance.. From the beginning this was a cherished hope of his parents. Summing it up, Ayden’s mother, Janet, said, “He pretty much walks, runs and jumps all over the place, and we are so grateful for that. But we know he still has a long road ahead of him.”