|
|
[Ed. Note: The opinions expressed below are solely those of the
author. They do not represent the opinions of the editor, publisher,
or this publication. Anyone with a medical problem is strongly
encouraged to seek professional medical care.]
NO, SHE IS NOT “FINE”!! Those were the words I was screaming
inside my head every time the words “she is fine... there is nothing wrong
with her.... she looks like a normal healthy child” were uttered. My
beautiful baby daughter was suffering and no one would listen to me. My
daughter had extreme pains in her legs for years, but all the doctors kept
telling me that the pains were nothing more than growing pains and she
would grow out of it. Growing pains? Are you kidding me? Are we still
living in the dark ages? She appeared normal to everyone else, but I knew
deep down there had to be something terribly wrong with her. She cried
and cried and at times could not walk. She would literally drag herself
across the floor. Some days there were no symptoms and other days it was
all I could do to console her. Her brother and sister felt she was crying
to get attention and wanted her to “shut up”. Tension was high in the
household. There were many sleepless nights. My husband and I had
concerns, but we felt our concerns were ignored as the doctors continually
said there was nothing wrong with her.
My daughter had pneumonia a couple of times and was taken to the emergency
room on each occurrence. During one of these visits it was discovered by
a radiologist that her spine was curved and he suggested that we follow up
with an orthopedic. An appointment was made and several months later she
was seen. The orthopedic confirmed that she had scoliosis, but he was
concerned that she had further complications going on in her body and we
were referred to a neurosurgeon. My husband and I were terrified for our
daughter, but relieved at the same time that her suffering would finally
end. After MRI’s and several tests, it was determined that my daughter
had Chiari I Malformation, Syringomyelia and Scoliosis. We were just
getting used to the fact that she had scoliosis, let alone these other two
conditions which we couldn’t even pronounce. The neurosurgeon recommended
decompression surgery and the ball started rolling from there. Our
friends, family and co-workers did not understand why she had to have this
surgery because she looked “fine”. There was that word again. It was
hard to explain to them the definition of this condition as we had no idea
of what it was either. Even after having it explained to us, we could not
grasp the severity of this condition. On July 1, 1999, our 5 year old
daughter underwent a five and half hour surgery. My husband and I, our
two other children and my parents were on pins and needles. My husband
who is a big, strong man broke down for the first time and did not want to
let her go into the operating room. They had to literally pry her from
his hands. When they finally said we could see her, I was not expecting
her to look the way she did. It took all I had to not pick her up and run
with her. What did you people do to our baby? My heart broke. She looked
so tiny and pale and there was nothing we could do to help her. After five
excruciating days in the hospital, we were allowed to take her home.
We thought she would heal and everything would be great. To our dismay, her
leg/arm pains returned and her scoliosis got worse. She was braced for
several years, but it did not hold the curves. During all of this, she
missed a lot of school. Teachers were not sympathetic and my husband and I
were even brought into the school’s office for truancy. Our explanations
were not good enough. We had to actually bring papers from the doctor that
explained our daughter’s condition. We even had one principal tell us “I
have kids here with real problems and your daughter is not one of them”. It
took all I had to not slap her right across the face. Instead, we just
walked out of her office. The ignorance of people is astonishing. The
mentality is - if we can’t see it, then apparently there is nothing
wrong.... In addition, the medical society should make this condition and
all the chronic pain that goes along with it more widely known to the
public. To this day, our daughter still complains of leg/arm pains. She
doesn’t have normal reflexes/touch and the doctors believe that is due to
the irreversible nerve damage caused by the Chiari I and Syringomyelia.
We were recently told that she will have to undergo the surgery where they
place the metal rods in her spine. Our hearts sank once again when we had
to sit her down and explain to her that she would have to undergo another
surgery. She cried and cried, but my daughter is a very strong little
girl. She is so worried about the scars. Some children already make fun of
her scar down her neck when she wears a ponytail. How are they going to act
when they see the scar down her back? Would she be able to ride a horse,
would she be able to run, dance and be a “normal” child? Will the pains
ever go away? Only time will tell...... but until then she lives her life to
the fullest and deals with pain everyday. Something that I don’t believe
most adults would be able to handle. However, this little girl shows the
world she is fearless time and time again.
My advice to anyone out there with a child who is experiencing similar
problems is..... you know your child better than anyone else. Keep pushing
the doctors until you get answers that you are satisfied with and don’t let
anyone tell you that you are crazy and your child is fine when you know
otherwise. Research and arm yourself with knowledge concerning this topic,
so that you can explain in laymen terms what Chiari I Malformation,
Syringomyelia and Scoliosis is all about to people who just don’t get it.
Would you like to share your Perspective?
Contact
Perspectives
|