Wednesday, August 19, 2015
Tuesday, August 18, 2015
Faces of CHD: Matthew's Story
Faces of CHD: A Heart of Gold Stopped Beating
Matthew’s Story
“O dry the glistening tear that dues that marshal cheek,
thine loving children here, in them thy comfort seek, with sympathetic care,
their arms around thee creep, for O they cannot bear, to see their parents weep.”
– William S. Gilbert
Last time, we talked about vaccines and their role in
protecting CHD patients. Now I would like to begin a series where every so
often, we will get to know a CHD patient, either a survivor, or an angel,
someone other than me who has gone through this, because as we covered in CHD
basics back in July, I am far from the only one.
On May 20th, 1996, one of my best friends,
Matthew Ethridge, was born. Matthew was a beautiful little boy from the very
start, with his bright, blue-green eyes, and his thick blond hair, but while he
looked healthy on the surface, he was far from ok. You see Matthew, had been
born with two very serious congenital defects. One of them, was Transposition
of the Great Arteries which is one of the worst kinds of
single defect Congenital Heart Disease that a person can have without needing a
full blown heart transplant. Instead, doctors have twelve months to fix it over
the course of three open heart surgeries, left untreated, it would have killed
him. The other major defect that Matthew was born with is called Aspleenia,
which is exactly what it sounds like, he was born without a spleen. This was
particularly bad, for someone already vulnerable to infection.
In a normal individual,
the spleen acts as a filter, recycling old blood cells out of the circulatory
system, and when it detects dangerous microorganisms in the blood, it creates a
type of white cell called lymphocytes and it's them that produce antibodies to
fight the infection. Without a spleen, Matt didn’t have the same capacity to
defend himself, which made endocarditis and sepsis, which we discussed in the
post before last, all the more likely, and him even more likely to succumb to
either one of them.
Matthew suffered many
medical close calls over the years, almost all of them due to his weakened
heart and immune deficiency, and in the course of that he never once
complained, he never stopped smiling, he never yelled nor cried out in pain or
fear. It was so much that we actually wondered if he understood that he was in
pain. I’ve never met anyone, not before, not since, who could take that with
childlike faith, honor, and acceptance. That takes a strength and a bravery
that cannot be taught, it was just in his nature and it carried him through
everything he had to face and lifted up those around him. To know him, was to
love him, and to spend any time with him at all, was to feel better about what
was going on in your own life. His resilience in the face of things that would
make most adults cry, the fact that in spite of it all he actually seemed to be
enjoying life, was truly inspiring.
It wasn’t until he was
six that his health began to stabilize, he was stronger and was actually
spending more time out of the hospital than in. He could finally play T-ball
and run around with his friends. Unfortunately, before anyone really knew what
was happening, that all crashed and burned and the good times came to an end.
On August 17th
2003, Matthew was admitted to a local children’s hospital with an infection. It
wasn’t the first time this had happened, but this time was different, whatever
the actual illness had started as, it quickly turned to sepsis and raged
through his body like a fire beyond control. While doctors tried antibiotics
and antivirals, the infection was spreading too fast, and without lymphocytes
to stop it. His body started shutting down and within hours he was on
life-support, unable to breathe on his own. He slipped in to a coma and for the
last time, his eyes closed. At some point on the night of August 18th,
he lost brain function completely and on the 19th, his parents,
doctors, loved ones, and friends let him go. The doctors shut off the machines
and allowed his body to die, but he wasn’t even really there anymore, he’d left
the previous night.
It shouldn’t have had to
be that way. He had been doing well, there had finally been reason to think
that he might actually have a life ahead of him, that he might grow up, raise a
family, grow old… all of that, was taken away from him in the space of two
days, just a few months after his seventh birthday. If anything, Matthew’s
story highlights the dangers of infection, just how quickly it can take a CHD
person down, as well as the need for research into how Aspleenia might be
better managed, those with the condition better treated and protected… Perhaps
in time a method can be developed for giving these children a normally
functioning immune system, so that this; never has to happen again.
I knew Matthew
personally, I knew him, I love him, and I miss him every day.
“A simple child, who lightly draws his breath, and feels his
life in every limb, what should he know of death?” – William Wordsworth
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