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On September 19th 2014 our sweet Kennedy Marie was born. Moments after her birth we realized there was something beautifully different about our precious little girl. Her little foot only had 3 adorable little toes and her little tiny lower leg (tibia) was bent and she had the cutest little dimple where it came to a point. All of this came as a surprise to us, we had had dozens of ultrasounds during my pregnancy and never once did our doctor see anything to be alarmed by.
At first we were being told that she had amniotic banding, but the doctors weren't even 100% sure about that. X rays were taken hours after her birth and by the next day we were told that kennedy was missing her fibula, and her tibia was bowed. That was all we knew for weeks.
Three weeks after kennedy was born we went to her first appointment with her orthopedic surgeon. It was then we finally had a name for our daughters condition; fibular hemimelia. Fibular hemimelia is the congenital absence of the fibula or the partial absence of the fibula. It is characterized by a shortened and/or bowed tibia Absence of the lateral part of the ankle joint (due to absence of the distal end of the fibula), and what is left is unstable. In most cases it results in a malformed foot with 2-5 toes.
We were told that our best option for kennedy was a symes amputation. This would mean amputating her foot and leaving her heel pad which would be the bottom of her little stump. Then she would wear a prosthetic. This choice was not an easy one for us. Having to amputate your child's limb is not something you ever think you will have to do. In kennedys situation this is the best option, Kennedys amputation is set for January of next year when she is 16 months old.
Now at 7 months old Kennedy is already Standing and trying to take steps (something we did not expect her to do so soon given her condition) our orthopedic surgeon recommended we meet with a prosthesis and have a prosthetic made to fit her existing leg until she has surgery. She has now been casted and already fitted for her first prosthetic but we have now found out our insurance does not fully cover the cost of her prosthetic. We are now faced with the cost of the prosthetic and all kennedys medical bills piling up. We are asking for donations to help cover the cost of this. Anything helps. Thank you so much for your help.
At first we were being told that she had amniotic banding, but the doctors weren't even 100% sure about that. X rays were taken hours after her birth and by the next day we were told that kennedy was missing her fibula, and her tibia was bowed. That was all we knew for weeks.
Three weeks after kennedy was born we went to her first appointment with her orthopedic surgeon. It was then we finally had a name for our daughters condition; fibular hemimelia. Fibular hemimelia is the congenital absence of the fibula or the partial absence of the fibula. It is characterized by a shortened and/or bowed tibia Absence of the lateral part of the ankle joint (due to absence of the distal end of the fibula), and what is left is unstable. In most cases it results in a malformed foot with 2-5 toes.
We were told that our best option for kennedy was a symes amputation. This would mean amputating her foot and leaving her heel pad which would be the bottom of her little stump. Then she would wear a prosthetic. This choice was not an easy one for us. Having to amputate your child's limb is not something you ever think you will have to do. In kennedys situation this is the best option, Kennedys amputation is set for January of next year when she is 16 months old.
Now at 7 months old Kennedy is already Standing and trying to take steps (something we did not expect her to do so soon given her condition) our orthopedic surgeon recommended we meet with a prosthesis and have a prosthetic made to fit her existing leg until she has surgery. She has now been casted and already fitted for her first prosthetic but we have now found out our insurance does not fully cover the cost of her prosthetic. We are now faced with the cost of the prosthetic and all kennedys medical bills piling up. We are asking for donations to help cover the cost of this. Anything helps. Thank you so much for your help.