You have four treatment options and all of them are less than desirable. The first option is to do nothing which isn't a good option as your child will have a hitch in their git along and this will cause more pain and discomfort in the long road. I'm sure that this is what was done a few hundred years ago.
The second option is reserved for very minor cases. There is no surgical intervention but rather the patient is fitted with orthopedic devices to stabilize the leg, ankle, foot. A shoe lift is implemented to bridge the limb length discrepancy. This is the option I hoped for. But Madeleine simply was not a good candidate. Really can you imagine operating a vehicle, be it car, bike, scooter or trike, with 5-6 inch shoe lift?
The third option comes into place when the problem is not super severe. If there is a good foot and a good ankle and some other preferable anatomies the leg can be lengthened. I haven't talked about that much on this blog since it is obviously not the option we chose but I will try to explain it as best as I can. Basically the child undergoes surgery to reconstruct anything that needs reconstruction. This can include osteotomies (bone cuts and correction), moving muscles around, cutting tendons, whatever. Then the bone to be lengthened is broken and pins are screwed into it. The child wears a fixator and the pins are turned daily as to stretch the bone and make it grow as it heals. This option is more of an 'option' when the child has a fully formed foot, a stable ankle and other anatomies.
The fourth option that can seem more 'severe' or 'drastic' is amputation. You can imagine my horror when this was mentioned as a form of 'treatment' for fibular hemimelia. Try to picture your child as an amputee! As it was explained to me while I was pregnant, "we can grow bone forever but asking the muscles and tendons to do the same is a whole different story. Sometime amputation as reconstruction is the best option".
Imagine that you are faced with these choices. One and Two are obviously not great options. You need to choose a treatment. You need to make this decision for your child. Yes, it is life altering. Yes, your child will never be the same physically (and dare I say emotionally) either way. Surgery is involved. Hospitalization is involved. Pain is involved. Stress, emotion, tears run wild in your mind. What do you?
Do you wait and see? A treatment option that many parents choose.
Do you consult all the doctors you can find? Seek a second, third and sometimes fifth opinion?
Do you travel to new hospitals, countries, conventions?
Do you read every newspaper article, medical journal, Internet site?
Do you consult other parents who have gone through this?
What do you do? How do you decide?
Imagine that every time you mention this 'decision' to others they gasp in horror. They tell you that they hope you will seek another opinion. They apologize and again you see the look in their eyes that tells you that they are so glad this is not happening to them. And somehow, you feel ashamed, like you did something to cause this. Like it is your fault.
Some have mentioned that only if the foot is really 'non-salvageable' should you amputate. Some have said, "I cannot imagine cutting off a piece of my baby". Like anyone can imagine that! Some have said that if you don't have solid financial resources amputation is your only choice. As if any parent would let money stand in the way of getting their child the best treatment.
Unlike many parents I knew that Madeleine had Fibular Hemimelia before she was born. I read the articles, searched the Internet, contacted families, consulted doctors and worried more than any mother should. I also prayed. I prayed hard that my baby would be a candidate for a shoe lift, lengthening, maybe she would be fine...