|
She was born on May 21, 1977. A perfectly healthy,
brown eyed, brown haired little girl. She was my firstborn and
I was very young. I also knew that I was very inexperienced...but we
would meet this challenge together.
We had all the things and experiences any new parent can
expect ~ the sitting up, the crawling, the walking.
We made all our visits to the pediatrician, and all seemed
well. However, just before her second birthday she became ill. We
had taken her for a weekend trip and she had developed
a fever. On Monday I went back to work and left her
with her grandma. When I returned home, Michelle had been sleeping
for several hours and when I went to check on her she
wouldn't wake up. We left immediately for her doctor's
office, which wasn't far. As soon as we arrived the doctor took
Michelle and I to the hospital. There was no time to
wait for the ambulance.
At the Hospital they checked her blood and told us she
had "severe low blood sugar." When they started the
IV she seemed to respond. She sat up and played with me, but
it wasn't for long. She quickly became very tired and laid down.
I remember sitting there with her holding her hand while they
were still checking to see what was wrong with her. The doctors
couldn't seem to keep her blood sugar up and she soon slipped
into a coma. Michelle stayed in that coma in
ICU for 5 days at Texas Children's Hospital in Houston.
Other than the "normal"
screenings her tests included Bacteriology tests for her blood and
spinal fluid, Heterphile screen, Leptospirosis Cultures, ECHO virus
7. As I thumb through the tests they ran, there are over 70
lab reports that I have copies of. All negative.
Our many prayers were answered when Michelle began to
respond and just as quickly as she seemed to fall ill, now she
seemed to be doing fine. When they released her from
the hospital they told us "it was probably a fluke." They
had not found exactly what had caused her illness, but "now she
was fine." They even felt it could have been a slight case of
Hepatitis. But she was coming home and that is all we
cared about.
Her next 18
years, health wise, were uneventful. She was "perfectly
healthy." She never had anything more than a cold. Her life
by all accounts was completely normal. School plays, choir,
driving, her first boyfriend, the prom, and even rebellion against
Mom.
When Michelle was 20 (in
1998) she decided to go camping with some friends
during Spring Break in Garner Texas State Park. They were due to
leave on a Friday. It would not have been uncommon for her
to stay up most of Thursday night with excitement. The
weather had been cold and her friends had told
us that none of them had gotten much sleep on Friday or Saturday.
On Saturday after climbing a mountain, they relaxed at their campsite
and had a few "drinks."
She first became ill on Sunday morning at about 5am. They
all finished their packing and headed home. Michelle continued
to be ill and took some Pepto Bismol to see if that would help.
It was about 8pm that they first took her to a hospital in
Wiemer, a small country hospital, about 65 miles from Houston. The
doctors in Wiemer felt they would be unable to treat her, mostly
because they could not find the nature of her illness .
I advised them to bring her to Herman Hospital here in Houston.
When Michelle arrived at Herman I met her at
the ambulance doors. When they opened the doors she seemed
fine. She recognized her father and I immediately. She
was also able to give her address, name, phone number and knew
it was after midnight and was worried about her friends getting
to work the next morning. With the exception of the times she was
talking to us, she would sleep. It was common for Michelle
to be a deep and restless sleeper. The doctors checked
her blood pressure, temperature, heart rate, and did a body check
for bug bites all of which I was present for. The blood
and urine tests came back with a negative blood alcohol
level, illegal drug use, glucose and electrolytes were "well within
range" per her doctors. They then did a CT scan ~ it also revealed
nothing.
The doctors wanted
to keep an eye on her just to be on the safe side and moved
her to Observation at about 7am on Monday. She died approximately
3 hours later.
The autopsy took four months and proved nothing .
The cause of Michelle's death was listed as "Natural Causes-Cause
unknown." I tried every avenue I could think of to try
and get answers. We checked with the Reye's Foundation, Liver counsel,
even SIDS groups trying to get answers. Trying to find out if the
illness when she was two and the cause of her death were related.
When we reached the one-year mark I had to make a call to the Medical
Examiner's office to find out what I needed to do to keep her tissue
sample longer than the "one year" time frame. I wanted more done
to find answers.
Our answer finally came 14
months after her death from the attending physician
who took care of her in Observation. It was as if he
was almost as disturbed by her untimely death as we were.
We were told Michelle's illness when she was two and her
death were most probably related. She had died from (undiagnosed and untreated) MCAD (Medium
Chain Acyl CoA Dehydrogenase Deficiency). MCAD is an autosomal recessive
disorder of fatty acid oxidation whereby certain fats cannot be
broken down and metabolized into energy.
Michelle was born during a time that tests for this were
not offered. However, now there are newborn
screenings that can test for MCAD and about 40 other possible
disorders as well. These expanded newborn screenings
could prevent illnesses and definitely save lives.
Michelle would have been alive
today, had she known that on the day she climbed that mountain with
her friends that she needed to keep her sugar level up.
Her "perfectly normal healthy" status worked against her. What
happened with our Family is a painfully sad reminder that these
screenings don't have to be limited to newborns. We
live knowing that we were given 18 years more than medical science
could have offered us 24 years ago, but we also know that, had we
known, she would be alive today.
Michelle's Mom, Theresa Murry
theresa.murry@shell.com
|
