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In 1975 my youngest son Jon, at 11 months old almost
died. He had a cold and was just "not himself," even quieter
and more complacent than usual. I had called our pediatrician on
Thursday and was unable to have Jon seen. The next morning he was
crying inconsolably (VERY unlike him), and refusing formula or food.
I rushed him to Tri-City Hospital in Oceanside, CA where he quickly
went down hill and into a coma.
An ER nurse told me all of Jon's vitals were off,
his glucose, liver and heart. She looked at me strangely, and with
anger in her voice announced that I had one very sick baby. What
she was thinking I can only guess. Stunned, all I could say was...I
know.
A cut down into Jon's ankle was needed to start the
glucose IV...he was unresponsive. Baffled, the ER doctors had called
in Jon's pediatrician. At first they thought it was Reye's Syndrome
and questioned whether or not I had given Jon any aspirin, which
I hadn't.
They contacted the Poison & Disease Control Center
in Atlanta. Unable to get any answers, Jon was sent upstairs swaddled
in nothing but green paper, with his IV, and put into an oxygen
tent. I believe he was also given antibiotics at that time. I was
numb with shock and fear—how could my baby be relatively okay
one minute and dying the next? So, I prayed, and I called Jon's
paternal great-grandmother in Missouri who daily incorporated an
hour of meditation and prayer into her life. We all prayed.
The doctors had said there was nothing else they could
do. As he lay there in that bed, I can still see the room, I talked
to him and sang to him and held his tiny little hand through the
tent...hours later...I have no idea how many, my baby stirred and
little-by-little awoke out of his coma.
The Doctor, when I thanked him, replied he had nothing
to do with Jon's survival. Still baffled, we were sent home a few
days later without a diagnosis.
His second serious episode happened in Springfield,
MO. Jon was hospitalized but responded fairly quickly to IV support.
The doctors said he was just hypoglycemic and to continue treating
him as I had been, basically with a diabetic diet.
Still, no real answers. Future pediatricians, this
time in Concord, CA, looked at me skeptically, and after further
testing laughingly told me there was nothing wrong with my son!
He had other small episodes which I was able to handle
at home with sugar. His energy seemed to deplete quickly at times,
and as coordinated and athletic as he was he did seem to stumble
a bit, especially on a hot day. I quickly found that cranky attitudes
(especially after naps and upon arising) would most often be quelled
with carbos, especially juice.
My son did thrive, his mysterious brush with death,
still an unanswered question.
Jon became the proud father of Nicholas in 1995, and
of his second son Christian in 1998. Of the two children, we all
thought Nick was to be the more extroverted of the two, out-going
and very social. Christian, while bright and sunny, a happy little
guy, was much more laid back.
One day while in his infant seat, sitting on our patio
table, I looked upon him and noticed the same dreamy look in his
eyes his daddy had as an infant. Flashing back to Jon's first episode,
I told myself I was crazy to think any such thing could happen again,
and that I was just being overly responsive to my memories.
At the end of February, 1999, the nightmare replayed
itself practically down to the detail, only this time it was my
infant grandson, Christian, who was fighting for his life at Children's
Hospital in San Diego. The sight of my beloved grandson just lying
there, so still, seeming to fight for every breath: seven IV tubes,
heart monitor, a main line, oxygen...it was all too much to bear
again.
My heart would break all over again as I saw the grief
and fear in my son and daughter-in law, a fear I knew all too well.
Caring for Christian's older brother was one of my greatest tests...looking
upon Nick's beautiful face...he was troubled knowing all was not
well with his brother. I would need to take myself to the garage
to weep and compose myself. Thank God for my husband and mother...for
they took care of Nick and me.
And There For The Grace Of God Go I...we are lucky,
we are thankful. A simple test could have prevented so much unnecessary
suffering. Financially, even with good insurance, this hit Jon and
Chrissy like a ton of bricks. At this point I am going to ask my
daughter-in-law to finish up. I believe, she may have already started
or even submitted our story.
In the end, I kept insisting Jon relay the extraordinary
coincidence between his episode and Christian's, in fact I also
did upon one of my visits to the hospital. The doctors seemed a
bit indifferent and seemed to shrug the coincidence off. My daughter-in
(Chrissy)-law's mother Maretta Clauson, is the person who really
got the ball rolling.
She is the bio lab supervisor at UCSD in San Diego,
and in relaying the story of one of the doctors at UCSD, who happened
to be a metabolic specialist, specific testing was begun for inherited
metabolic disorders.
Christian and Jon are both on Carnitor and doing terrific!
Kathryn Knieff Bostick Sumek
Son, Jon MCAD
Grandson, Christian MCAD
kdkbs@aol.com
Alot has happened since my mom wrote the above story. I had a brain aneurysm clipped October 6, 2008. I am very fortunate that they caught the aneurysm when they did. The wall of the aneurysm was very thin and could have potentially ruptured at any time.
I am managing Christian's little league team and have Joshua and Nick playing baseball as well. So Chrissy and I have been pretty busy. Everyone is doing pretty well. The kids are active with sports. Since (my mom's version of our story) we have had a girl, Kylie,4-yrs-old, as well. She is a carrier of the gene along with our oldest Nick, 13-yrs-old.
Christian, now 11-yrs-old, and Josh, 7-yrs-old, are both affected by MCAD. We try not to let the MCAD get in the way of their activities. We just monitor Christian and Josh closely. It seems to get easier to manage as they get older because they learn to recognize when they think they are starting to get into trouble or just don't feel right. We'll write more at a later date.
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