Frequently asked questions
Why does Alicja need a leg reconstruction? How is Dr Paley going to reconstruct her leg?
Why does Alicja need a leg reconstruction? How is Dr Paley going to reconstruct her leg?
Alicja is missing her right tibia (in medical terms, we call it tibial hemimelia). Because of the lack of tibia, our daughter is missing her right knee and ankle joints. Therefore, she cannot weight bare on her right leg nor can she control the movement of her knee. However, she can feel her foot; she moves her toes and even has tickles. Also, the upper part of the leg is functioning perfectly.
The surgery will have three stages. During the first stage, the surgeons will reconstruct Alicja’s knee joint, place her fibula in the position where the tibia normally is and apply an external fixator which she will have to wear for around four months. The second stage will take place two or three months later and will consist of reconstructing the ankle joint and placing the foot in the right position. Finally, during the third stage, the doctors will remove the external fixator and put the leg in a plaster that Alicja will have to wear for a month. The whole reconstruction will take 6-7 months. After this treatment our little one will be able to learn how to walk even though her right leg will be roughly 10 cm shorter than her left one. It may be lengthened in the future if we wish to do so.
From a developmental point of view, Alicja is ready to learn how to walk and she uses a temporary prosthesis for this. This prosthesis (that we put over Alicja’s deformed leg) cannot however be a long term solution.
Why can’t Alicja just walk on a prosthesis similar to the one she has now? This way, she would not only avoid the amputation but also the reconstruction surgeries.
Alicja’s temporary prosthesis is “saving our life” as it allows her to learn how to walk even if she is missing a big part of her right leg at the moment. However, it’s very heavy, twice as big as her healthy left leg and very difficult to be put on (mummy is afraid to harm Alicja when doing this, so only daddy puts it on). Additionally, Alicja cannot bend her leg with this prosthesis, nor can she stand up or sit down with it. We cannot imagine our child, who has so many other health issues, ever becoming independent with a prosthesis of this type. And this is the only prosthesis type she can have, unless the leg is amputated.
Why don’t you decide to amputate the leg? Your little girl has already had so many different surgeries and she has already suffered so much! Wouldn’t amputation be a better solution for her?
We discussed it so many times... And every time our conclusion was that the reconstruction with be a much better solution than the amputation.
First of all, Dr Paley has convinced us that Alicja, who has many other developmental issues such us balance deficiency, significant visual impairment and hearing impairment, will learn to walk much better and faster if she feels her own foot on the ground (she wouldn’t feel it if she wears prosthesis).
Also, we know that our little girl would suffer a lot if she lost her leg. She isn’t a baby anymore (she will soon be 4 years old) and she knows her body perfectly. More importantly, as a deaf-blind child, she is much more aware of her body (especially of her arms and legs) than of whatever happens around her. She loves to play with her hands and legs. And she definitely loves both her legs equally...
Additionally, amputation is not an easy and painless procedure. Before we made the decision to go ahead with the surgery, we read about amputations a lot. We read about patients grieving their lost limbs and about “phantom limb pain” which cannot be stopped by taking painkillers.
Finally, the decision about amputating the leg is irreversible... Alicja would need a through-knee amputation. She would then never have her own knee and all her prosthesis would need to cover the whole femur. Wearing prosthesis can be painful; the skin easily sweats and gets irritated. Alicja, as a child with multiple problems, would probably never learn how to put her prosthesis on by herself, she would always have to rely on others’ help. And then, as a person with extremely poor balance, she would always need a very good prosthesis. They cost a fortune and need to be changed every year until the child stops growing…
Alicja was implanted with an Auditory Brainstem Implant in Italy in February 2012. Why do you have to go for treatment abroad again this time?
Alicja is a very special and unique little girl. Only approximately 100 children worldwide have so far received an ABI (most deaf children can hear with either hearing aids or cochlear implants) and only one in every million children is born with tibial hemimelia. It is quite normal that not many specialists are needed to treat the handful of patients suffering from the above conditions. Dr. Colletti from Verona is the only doctor we know that was able to treat Alicja’s deafness. Same, Dr. Paley from Florida is the only one who can save her leg.
What did doctors at home offer us instead? A sign language course instead of hearing through the implant! And amputation instead of leg reconstruction! We keep fighting for our daughter. If we didn’t, Alicja wouldn’t hear a single sound in her whole life and she would have had her leg amputated a long time ago. But we want to give our little girl the best possibilities for the future. That’s why we keep fighting. That’s why we ask people for help!
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