In
my family there are four of us girls, including myself, who are amputees of one or
both of our legs. It's a birth defect and I've never known the name of it. It
runs in our family and we have no answers as to why...or why is hasn't affected
any of the boys...only the girls...so far. My daughter Bambie and I are the only
two 'double' amputees, meaning that both legs are off from the knee down. My
sister Cindy and my mother each have only 'one' leg amputated.
Also, my sister
Cindy has a deformed left hand and my daughter has a deformed right hand. Both
of my hands are perfectly normal.
To
make a long story short, I had a number of operations, some experimental, during
the first five years of my life at Johns Hopkins Children's Hospital, as well as
my sister. Sometimes I'd be the one in the hospital, and Cindy got to come home
for a while, and other times it would be her turn to go into the hospital and I
got to come home for a while. And then there were those rare times where we
would both be in the hospital at the same time. Actually, that's how we met, in
the hospital. We didn't know we were sisters.
At five years of age I finally had the last of my
surgeries and amputations. I was soon fitted with artificial legs and I went out
and lived my life. I have never had crutches, a wheelchair, a cane, or a
walker...none of us have. My son Billy and my brother Alan were born normal. My
sister and brother's children were not affected with this birth defect. I,
however, passed it onto my daughter.
I have some pictures that may interest you. My
favorite picture is my mom-mom kissing me good-bye before going into the
hospital for my last amputation. I was always thrilled to be in her arms. She
was my favorite person in the world and the only one who made me feel loved. To
me, she was my mother. I still miss her. She died when I was about 15 years old.
The pictures are a little farther down the page after the description.
Description Of The Birth
Defect
Starting with my mother, with her
right leg, the major bone from the knee down, the tibia, never formed. She had
some ligaments and tendons that were also missing. The foot was turned inward. I
was affected by the same thing in both legs. The fibula bone was present, but
curved in. My feet were also turned inward.
There was no way to know
this was hereditary, and it's still not something that shows up all the time. My
mother was the first to have this in our family and it was thought to have been
a fluke.
When my sister Cindy was born, to
the best of my knowledge, her left leg was deformed differently...which is why
she had so many more surgeries. From what I understand, her tibia (the larger
bone) had only formed about half the way. Her fibula (the smaller bone) had only
formed about half the way, as well. So, one bone was formed coming one way and
the other bone was formed coming the other way...neither one completely formed.
Also, Cindy's left hand was
deformed. The middle and index fingers had grown as one. The picture of her hand
gives a better description. Neither one of my hands were affected.
When my daughter was born,
as stated above, her legs were exactly like mine, but her right hand was
deformed. She only grew the thumb and index finger. The metacarpals were
there...just no fingers.
No where else was this birth
defect found in the family genealogy. The closest anything came to it, was a
distant grandmother who had webbed toes and fingers. My mother has a sister, who
is four years older than me, and nothing is wrong with her. My mother was the
first to have this birth defect, in our family.
Now, this is going to sound
strange...I am not superstitious whatsoever, but my grandmother told me (my
mom's mom) that when she was pregnant with my mother...her second child....they
had a cat that had kittens that were born with deformed back legs. Back then
people did things that are not acceptable in our society today, but grandmother
told me she took the kittens down to the creek and 'put them to sleep'
(I know, I feel the same way you do about it). And, with her superstitious
thinking, she felt she had 'marked her baby', my mom, by seeing
something that horrible, thus, carrying on the 'mark' to my mother
before she was born.
I don't believe it, either, but it does make me wonder if
she had been exposed to a chemical or something that caused the birth defect in
the kittens and my mother. It's just a thought. I found it to be a strange
co-incidence, nevertheless.
I have very recently
discovered what I 'think' is the name of my birth defect and very soon
I hope to be able to find out more about it and have a separate page explaining
it better. In the meantime, this is what I have so far...and it sounds like this
is it! If you look at the pictures on this page, it fits the description
perfectly and the photo of the one leg looks like one of my own baby pictures.
Also, the hand deformities are common with this particular defect and it fits my
sister and daughter's hand deformities. If you look on my 'About
My Legs2' page you can see the similarities of the legs a little better.
Paraxial Tibial Hemimelia
- distal end of femur is hypoplastic, tibia is absent,
& proximal
dislocation of fibular head;
- incidence is 1 in 1 million.
- has a familial inheritance;
- tibial hemimelia may be terminal or intercalary,
complete or incomplete.
- 30% percent of cases are bilateral
Because of all the 'fake'
letters I receive from people who 'pretend' to need advice and discuss a
supposed birth defect, I am no longer answering questions or letters from anyone
about my legs.
You can thank the
game-playing devotees for this.
Another thing I got tired
of was spending my time writing back to people who 'ask' for help or advice and
then I never hear from them again, not even so much as a thank you for the time
I spent answering them. I am a very busy person and don't have time for the
games or ungratefulness.
