Sunday, July 6, 2008

Imagine Part 2

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...


Jenna said...

I remmeber those days all too well. What a tricky decision to make yet such a simple one(you know what I mean), I cant belive people would assume that money plays into all of these choices! People just dont know this world we are in. Big hugs, I value you so much.I appreciate all that you do for me.

twin power mommy said...

I DO remember the horror i felt when they told me Caitlyn was going to need an amputation.
You always worry about your girl being unmarred. I remember thinking "well at least if she was a boy, i'd feel a bit different about the amputation. Boys think that kind of stuff is cool, for girls it can be traumatic."
I don't know how valid those thoughts were, but they were what i remember thinking at that time.

Caitlyn is a candidate for the leg lengthening. Our doctors want to wait until she is a bit bigger and more able to handle it. Right now, with shoe inserts (very thin ones) we deal just fine. Her leg length discrepancy is very mild. She has more muscle, tendon and superficial damage that we are concerned with at the present time.

You can't ever go back and question your decision to amputate. She is who she is now and that's just beautiful. It actually opened up a whole world for you. I try to think about how i would have never met some really neat people (like i have) had Caitlyn not been "special".
I probably would have gone about my merry 'ol life not having learned to stop and pay attention to the struggling mom with a special needs kid. Not explaining to my kids that sometimes God gives us parents kiddos that are special for a reason.
I don't know if those things would have been clear to me, had Caitlyn not been blessed with her lilly leg.

Lizzie said...

Beautifully written as always, and you have described exactly what John and I went through with Paddy. Thank you Niki, it bought tears to my eyes. I am so glad I have had the pleasure of meeting you through the forum and then been able to read you fabulous blog!

BethGo said...

She IS fine.

She is.

I can't imagine having to make the decision that you did but I can imagine making it.

We do what we have to for our kids.

I really admire you.