James'
Story
It is
with much grief that I am writing this letter to you. On
December 15, 2005 at 2:35 PM, my son James was pronounced
brain dead by the medical team at Children's Medical Hospital
in Dallas. James was an incredible son who fought very
hard for the last 25 days of his little life.
Perhaps
you would like to know about this avoidable tragedy. James
had gotten a virus on October 28th that was more powerful
than we knew. He was running a temperature of 103 for approximately
10 days with no subsidence. After two trips to the doctor's
office to see what was going on, it was determined to be
viral and not bacterial. So the standard course of treatment
is ride it out, get lots of fluids and rest and this will
pass. After 10 days, the fever began to subside and he
was running very low grade temps for another week or so.
During this time, James' only symptom was the fever. He
did not have any other complaints or symptoms like a belly
ache or throwing up. Our family had planned a trip to St.
Kitts for Thanksgiving and James was feeling great leading
up to our departure date of November 20th. On the plane
ride to Miami, Michele had noticed via the sunlight coming
through the plane's windows that James' eyes were a slight
shade of yellow. Considering we woke that morning at 4:30
for a 6:00 am flight, she thought that maybe he was just
over tired; but she would keep an eye on it. When we got
to St. Kitts, everything appeared fine. We walked the beach,
had a nice dinner and James was feeling great. By Tuesday,
James was jaundiced. Andrew and James were playing in the
bathroom of the hotel and giggling. What they were giggling
about was the color of James' urine. It was bright orange
in color and soon became dark brown. Michele and I quickly
began to type in those characteristics on web MD and found
Hepatitis A, B, and C pop up. We explored the topics in
detail and James looked as though he had Hepatitis A. We
saw the island doctor on Wednesday and he concurred that
his symptoms appeared to reflect those of Hep A, but said
that if it were his son, he would go home and have him
worked up to rule out liver failure. So that's what we
did.
We could
not get back home until late Friday and we took James to
the Cook Children's Hospital in Fort Worth on Saturday
morning. They ran a workup on his blood and checked him
over before sending us home. They too felt that James had
Hep A, but we would all have to wait to see the lab results.
The ER doctor recommended we see a Gastro-Intestinal doc
(GI doc) to further evaluate James. An appointment was
set up for the following Friday (almost 2 weeks later per
the ER doc); however the GI doc assigned asked that we
go to a local medical facility for another blood test to
have comparative results. We did that test on Thursday
and received a call from our pediatrician on Saturday morning.
After reviewing the results, the GI doctor was very concerned
with several measures taken from his liver function. He
told us to watch out for pitichea (sp?) and a fever of
102 or higher. Late Saturday night, the red dots began
to appear. We called our pediatrician at 1:30 am Sunday
morning and he said to take James in to the Hospital ER.
I did that. Once there, they took another blood sample
and found his liver numbers to be even worse. The ER doctor
told me that my son was suffering from liver failure and
that he was sorry.
We were
admitted into the hospital immediately and met with our
GI doctor on Sunday around noon. He had started James on
a hydration program along with vitamin K injections. Apparently,
vitamin K infusions can reverse some cases of liver failure,
and if it works, it does so fast (1 to 2 days). By Tuesday
the labs were showing no improvement. He had a few measures
that looked good; however most were declining. At this
time, James clinical evaluation was looking very favorable.
Our GI doc wanted us moved over to the liver specialists
at Children's Medical Hospital in Dallas. The transfer
finally occurred on Friday. Up until the transfer, James
was in no pain anywhere and only showed signs of fatigue.
That would soon change.
When
we arrived at Children's in Dallas, James took a turn for
the worse. He began to experience the onset of hepatic
encephalopathy. This is characterized by a state of confusion
and disorientation followed by the potential for coma.
I had no idea what was happening and Michele vaguely had
a clue. James became confused as to where we were or why
he was there and barely knew who Michele and I were. He
was experiencing an increasing pressure on his brain due
to the rising levels of toxins in his body that the liver
would no longer filter out.
Within
one hour of being in Dallas, we were rushed to ICU and
the best team of doctors for this type of illness began
their work. They were performing fantastically in controlling
James' pain and suffering. They were quick to determine
the liver is failing fast and that he needed to get listed
for a liver transplant. Within 24 hours of being there,
they were able to get James listed and his critical status
had him as the 1st person on the national liver list. There
is an algorithm that scores patients in an unbiased manner.
James' condition was titled "Acute Liver Failure" and
he was the only A1 status case in Texas. It was the belief
of the transplant team that we would have an organ within
48 hours. As it turned out, that was all the time we actually
had.
Unfortunately
for James, an organ did not show up for 80 hours. During
the last 12 to 14 hours of our waiting, the swelling in
James' brain was getting worse. Toxins were attacking his
brain cells and destroying them at an increasing rate.
The clock was ticking and we desperately needed a functioning
liver.
The operation
took place at 3:30 am Wednesday morning and completed successfully
at 8:30 am. Everything went smoothly, although the doctors
had cautious optimism due to the brain swelling. The liver
began functioning immediately. It was cleansing his system
and clearing his jaundice symptoms. Everything looked great.
Unfortunately for James, the swelling in his brain was
not subsiding. As each cell died, more swelling occurred
making matters worse. It was a chain reaction that took
his brain pressure from a normal average of 8 to 10 millibars
to over 88 millibars. I don't know what exactly that means,
but they were concerned at keeping the pressure under 20
millibars during their life maintenance procedures leading
up to surgery. In the end, we lost out to time. But that
loss was extremely AVOIDABLE!
Let
me tell you why this is an avoidable tragedy. There are
thousands
and thousands of people who die each day across the US
for one reason or another. Statistically, about 50 or so
of them per day are quality organ donor candidates. The
baseline criteria to be an organ donor are 3-fold: 1) the
etiology (cause of death) must be known, 2) the deceased
must be on a ventilator sustaining body functions, and
3) the deceased must be pronounced brain dead. The process
is more complicated than that, but that’s a pretty
good baseline perspective. Even though many people who
die are buried with healthy organs, transplant medical
professionals will only use the parts from someone with
a minimum of those 3 criteria met. Of the 50 or so daily
candidates, many take their parts to the grave even though
that they most certainly will not need those parts anymore.
In most of these instances, the loved ones left behind
either do not know their deceased one's wishes, or their
own anger and/or grief interfere with their ability to
fully grasp the one last gift their loved one can provide
to another human being. Whatever the reason, James did
not get a suitable liver offered to him in the time he
had and he died.
I am
very angry that we as a nation speak loudly of compassion;
yet how many of us sitting right where you are now are
organ donors? We don't think of these things because we
think of this sort of thing as morbid, or perhaps we are
thinking that these kinds of things don't happen to me
or the people I know, so why should I care. God gave each
and every one of us the gift of life. What greater honor
could we show God than to share with our fellow man by
giving that very same gift of life to another? Imagine
just how big of a smile the Lord has on his face every
time a person honors another in his name.
If the
first time you think of organ donation is when you are
in the midst of a crisis, or God forbid if someone has
to make that decision for you because you did not make
your wishes known, then you can better understand why James
is dead. Life-saving organs are buried every day and some
lives are cut short every day because most likely we feel
that this is a subject too morbid to thik about. It is
time we start to look at the big picture and realize that
in the wake of a tragedy, some good can come. To make tough
decisions, you have to know what you are going to do before
that day comes and you have to make your wishes known to
all your loved ones. In a matter of 5 days, I found myself
on both sides of the coin (First a recipient and then a
donor). After suffering through the waiting, I am committed
to seeing that no other family endures what James and his
family had to endure. This boy's life should not have been
at risk like this. Thousands dying daily and he has to
wait 80 hours (3.33 days) for some family in a position
to feel compassion, and to show it. It sickens me that
this has happened and worse yet, that most of us are still
unsure about whether we can check the box or not at the
DMV, or fill out an organ donor card. Shame on us.
-
Frank Curtin
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