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Tuesday, May 12, 2015
Violet-8 months
Now's the time.
We went to see Violet's orthopedic surgeon last week and now's the time that we need to make a final decision about her treatment. She is starting to pull up to stand, and proving to us that she wants to walk soon, so we need to make a way for her to do that. I say this now, but in reality we have been fairly certain about our decision since the first time we saw her doctor.
Let me go into a little bit of an explanation about the severity of her condition before I explain the reasons for our decision. Violet has a complete absence of both fibulas, which in itself is not at the center of our decision because it doesn't have as much impact as the structure of her ankles and feet. The fibula is the big bone on the outside of your ankle that you see poking out, so obviously the absence affects the ankle joint, but functionally it's not as important as a well-structured foot. Violet is also missing a lot of the other bones in her ankles and feet. Her doctor refers to this as a "partial foot." You can understand that this also means her feet do not function the way a normal foot is supposed to. Her left foot is more severe, consisting of two tiny little toes basically sticking out of her leg, no ankle, not much there. That is the one that we can be 100% sure that she will never be able to use. Her right is slightly more structured in that it appears to have an ankle and three toes, but that ankle is not functional. The reason is that the tendons in her ankle are so tight that her foot is stuck very stiffly in a position where the bottom of her foot is twisted in an upward-facing position. When she stands on this foot she stands mostly on the end of her leg and top of her foot. The doctor says that when there's that amount of structure there, it can be a big question of whether the foot will be functional or just a hindrance to the child. In Violet's case, trying to correct the foot into a position that is usable for her is probably not going to work. If she had more mobility in the foot to begin with, things might be different. If we really pushed, I'm sure we could find a doctor that would attempt corrective surgery on this foot. But results are never guaranteed and we don't see very good chances of these surgeries working for her.
Now let me explain what a "worst case scenario" might look like for us. A lot of people seem to think that amputation of a child's foot is the worst case scenario. But to me, as her mother, this is what the worst case scenario looks like:
We amputate her left foot and get her a prosthetic because there really isn't another option for that one. We go into the process of attempting reconstructive surgeries on her right foot. (I have a problem with this term because "reconstructing" infers that there was something there to begin with, when in reality she doesn't have much to start with.) So this process, in reality, may require 10, 20, 30 surgeries (we really have no idea how many it would be). There's no knowing whether all of these surgeries would result in a functional foot. Basically, we would be putting her through A LOT for the small chance that she could have a fleshy, less functional foot, when there's a 100% chance that we could give her a plastic, well-functioning foot. Imagine the amount of time spent in the hospital for a child who goes through that many surgeries. Imagine the amount of pain that child goes through. Imagine that after all that surgery, chronic pain is very likely! MY worst case scenario, as her mother, is just that! Seeing my baby in pain, and for what reason? So that her foot looks somewhat more normal because it has human skin on it? Her foot has three toes on it, so it wouldn't look normal anyways. And the looks of her feet doesn't matter to us as much as her ability to use them. Anyways, if we did choose that option, in all likelihood she could choose to have her own amputation once she's old enough to make that decision. Yes-this happens!
So, we have chosen amputation for both feet. We believe this to be the best thing for her, and frankly, I would be offended if anybody thought we were the type of parents that would settle for anything less than the absolute best for our child. We also believe that we have found very good doctors for her, ones that are both knowledgable and caring, so that they will give us the very best advice that they can and will do what they think is best for her. We trust her doctors and the advice that they've given us. No, we do not take their words and follow them blindly. We obviously would not take the decision to amputate limbs lightly. But we have taken their advice and used it in our decision. We've prayed about it and we've talked about it and we've tried to follow what our hearts tell us.
Another advantage to the amputation of both feet is that she will be symmetrical on both sides. This will come in handy because she'll be able to walk without prosthetic feet on. Yes-she'll be able to walk around on her stumps. With one foot and one stump, there will be a length difference that may hurt her back when she's walking without her prosthesis on. This wasn't a factor in our decision, just an added bonus.
If you still think that amputation is the worst case scenario, I encourage you to look up some amputees online. There are a lot of child amputees around the world that are just like any other kid. They walk, run, play, and play sports to any degree that they desire. There are athletes all over the world who are amputees as well (remember Oscar Pistorius?), actresses, super models, and of course veterans that go on "Dancing with the Stars". She will be able to do whatever it is she wants to, and she will make us very proud!
Let me go into a little bit of an explanation about the severity of her condition before I explain the reasons for our decision. Violet has a complete absence of both fibulas, which in itself is not at the center of our decision because it doesn't have as much impact as the structure of her ankles and feet. The fibula is the big bone on the outside of your ankle that you see poking out, so obviously the absence affects the ankle joint, but functionally it's not as important as a well-structured foot. Violet is also missing a lot of the other bones in her ankles and feet. Her doctor refers to this as a "partial foot." You can understand that this also means her feet do not function the way a normal foot is supposed to. Her left foot is more severe, consisting of two tiny little toes basically sticking out of her leg, no ankle, not much there. That is the one that we can be 100% sure that she will never be able to use. Her right is slightly more structured in that it appears to have an ankle and three toes, but that ankle is not functional. The reason is that the tendons in her ankle are so tight that her foot is stuck very stiffly in a position where the bottom of her foot is twisted in an upward-facing position. When she stands on this foot she stands mostly on the end of her leg and top of her foot. The doctor says that when there's that amount of structure there, it can be a big question of whether the foot will be functional or just a hindrance to the child. In Violet's case, trying to correct the foot into a position that is usable for her is probably not going to work. If she had more mobility in the foot to begin with, things might be different. If we really pushed, I'm sure we could find a doctor that would attempt corrective surgery on this foot. But results are never guaranteed and we don't see very good chances of these surgeries working for her.
Now let me explain what a "worst case scenario" might look like for us. A lot of people seem to think that amputation of a child's foot is the worst case scenario. But to me, as her mother, this is what the worst case scenario looks like:
We amputate her left foot and get her a prosthetic because there really isn't another option for that one. We go into the process of attempting reconstructive surgeries on her right foot. (I have a problem with this term because "reconstructing" infers that there was something there to begin with, when in reality she doesn't have much to start with.) So this process, in reality, may require 10, 20, 30 surgeries (we really have no idea how many it would be). There's no knowing whether all of these surgeries would result in a functional foot. Basically, we would be putting her through A LOT for the small chance that she could have a fleshy, less functional foot, when there's a 100% chance that we could give her a plastic, well-functioning foot. Imagine the amount of time spent in the hospital for a child who goes through that many surgeries. Imagine the amount of pain that child goes through. Imagine that after all that surgery, chronic pain is very likely! MY worst case scenario, as her mother, is just that! Seeing my baby in pain, and for what reason? So that her foot looks somewhat more normal because it has human skin on it? Her foot has three toes on it, so it wouldn't look normal anyways. And the looks of her feet doesn't matter to us as much as her ability to use them. Anyways, if we did choose that option, in all likelihood she could choose to have her own amputation once she's old enough to make that decision. Yes-this happens!
So, we have chosen amputation for both feet. We believe this to be the best thing for her, and frankly, I would be offended if anybody thought we were the type of parents that would settle for anything less than the absolute best for our child. We also believe that we have found very good doctors for her, ones that are both knowledgable and caring, so that they will give us the very best advice that they can and will do what they think is best for her. We trust her doctors and the advice that they've given us. No, we do not take their words and follow them blindly. We obviously would not take the decision to amputate limbs lightly. But we have taken their advice and used it in our decision. We've prayed about it and we've talked about it and we've tried to follow what our hearts tell us.
Another advantage to the amputation of both feet is that she will be symmetrical on both sides. This will come in handy because she'll be able to walk without prosthetic feet on. Yes-she'll be able to walk around on her stumps. With one foot and one stump, there will be a length difference that may hurt her back when she's walking without her prosthesis on. This wasn't a factor in our decision, just an added bonus.
If you still think that amputation is the worst case scenario, I encourage you to look up some amputees online. There are a lot of child amputees around the world that are just like any other kid. They walk, run, play, and play sports to any degree that they desire. There are athletes all over the world who are amputees as well (remember Oscar Pistorius?), actresses, super models, and of course veterans that go on "Dancing with the Stars". She will be able to do whatever it is she wants to, and she will make us very proud!
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