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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 checkups,
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 am the next
morning, I awoke to find Ben opening and closing his eyes, but non-responsive
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 frantically searching for advice and help from
911 while beating his fist into the floor and begging for 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 misdiagnoses
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" and it was signed
by the governor into law during a special ceremonial signing on
Monday, April 16. 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.
Vince & Robin Haygood
Parents of Ben (2/19/98-8/8/2000) MCAD, postmortem diagnosis
Lori (age 8) unaffected
Leslie (age 6) unaffected
662-844-3974
10298 Hwy 9 North
Belden, Mississippi 38826
rlbhaygood@hotmail.com
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