Ben's
Story
On
February 19, 1998, Ben entered our life. He
was a beautiful full term baby boy and our third child. Ben received the minimum state-mandated
newborn screenings after he was born and was thought to be healthy.
During
routine well-baby check-ups, Ben was thought to be a typical child.
He was growing and developing normally.
During
his brief 2 ½ years of life, Ben had learned to swim, to identify landmarks on
the way to his grandparents' house, to distinguish among the vehicles his
various grandparents drove, to drive his own little Power Wheels Ford Pick-Up
Truck, to pick out his Daddy's backhoe key among a cluster of other keys, and
had become fully potty-trained.
He
seemed so normal, so healthy. Little
did our family realize that a "silent killer" was present in our Ben.
On
Monday, August 7, 2000, Ben became ill with vomiting.
He had no other symptoms such as fever or diarrhea.
He had been sick with vomiting before, so, we treated him by forcing
fluids and small amounts of food to prevent dehydration.
Vince and I stayed up with Ben until 10:30 while continuing to give him
drinks. He slept on a pallet beside
our bed that night. At 1:30 A.M.
the next morning, I awoke to find Ben opening and closing his eyes, but
unresponsive to our commands. Suddenly,
Ben stopped breathing and his heart stopped beating.
I began CPR immediately on
our living room floor while whispering what I feared might be my last words to
my son. Vince was on the phone
searching for advice and help from 911 while asking Ben to come back.
Ben didn't come back. He
was transported to the local hospital by helicopter where attempts
were made to revive him. No one was
successful. Our apparently
healthy son was dead within 12 hours of showing
symptoms of illness.
Doctors
and state health officials speculated about the cause of Ben's death for
almost a month. The list of
misdiagnosis included: sepsis,
meningitis, mosquito-borne encephalitis, and Reye's Syndrome. About a month after Ben's autopsy, we learned the real
cause of death, a disorder we had never heard of before, MCAD.
Adding
to our devastation, about a week after Ben's MCAD diagnosis, we learned that
his disorder could have been detected at birth or any other time before his
fatal crisis with a $25 blood test. With
this simple, inexpensive screening, doctors would have been able to diagnose
Ben's "silent" disorder. With
an early diagnosis, a treatment plan would have been devised and Ben's
prognosis for a normal, healthy life would have been excellent.
One doctor told us that with early detection of the MCAD disorder that
Ben would most surely be alive.
Since
Ben's death, we have been very busy promoting expanded newborn screenings.
We have written local pediatricians and obstetricians/gynecologists
several times. We have written our
legislators. Two local state
representatives wrote a bill to require that doctors at least inform parents of
these additional tests that are not required by law so that parents will have a
choice to test their children, a choice we never had.
The bill was titled, "Ben's
Bill". It was signed by the
governor into law during a special ceremonial signing on Monday, April 16, 2001.
Although
our lives will never be the same because losing Ben was so unnecessary and
unacceptable, we are proud of Ben's impact on the future of children's
health in our state. We will
continue our efforts to mandate CNBS in our state so that our children will have
the best chance for a healthy life and parents will not have to endure such
immense pain.
Sincerely,
Vince and Robin Haygood
Written September 2001 by Vince and Robin
Haygood
Parents of:
Ben, MCAD-postmortem diagnosis (2/19/98 - 8/8/2000)
Lori, unaffected
Leslie, unaffected
Bo, unaffected
Belden, Mississippi
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