May 2, 2013 our journey began!
I have spent the past year educating myself on FH (fibular hemimelia) and PFFD (congenital femoral deficiency).
We have seen numerous doctors around the Chicagoland area.
All recommend amputation. My heart has always said amputation but, we wanted to know what Matthew’s life would be like if we decided on the limb lengthening path. Matthew had an MRI April 2014 we traveled to West Palm Beach to see the world renown limb lengthening Docter Paley. He and his staff educated us further on Matthews diagnoses. Dr. Paley said upon Matthew reaching full skeletal maturity his leg length discrepancy will be a little over a foot. Matthew would require the following procedures; super ankle procedure, 3 tibia lengthening’s along with the tibia straightened, knee reconstruction and his femur would need 2 lengthening’s. These procedures would require me to move to Florida during each procedure and all procedures come with intense therapy and complications.
Dr. Paley stated to us he could answer all of our questions because he has done the most research however, he could not tell us how an amputee is physiologically. My response was “Can you tell me how Matthew is going to be psychologically after going through 20 years of procedures and still walking on an unstable foot”? Dr. Paley can lengthen bone all day long but, he can not give Matthew the lack of foot he is missing.
Mike and I have made another round to see all the Chicago doctors again. We wanted all to review the MRI and see if they all still believed amputation was the best answer for him. During our meeting with Dr. Ackman he introduced us to his patient in the room next to us who has Fibular Hemimelia. Alex is a brave 8 year old boy, who was amputated at 7 months old and nothing has stopped him. He sat in our room bravely showing off his leg (stump). Mike and I asked the family several questions and were MOVED by Alex’s strength. After the appointment Mike and I visited Schek and Siress prosthetic clinic. Alex’s mother was sitting in her car next to us. She answered even more questions I needed answered and I can not thank her enough. She helped me get the courage to make Matthews amputation appointment.
We know one million percent we are doing what’s best for Matthew, its just not easy to depart from our baby’s foot.
We hope Matthew’s journey helps other families when going through the tough decisions that you face with this diagnosis.