Cal Sheridan's Story
My son, Cal, was born a healthy baby boy on March 23, 1995 in a large
accredited hospital that delivers over 5500 newborns a year. Cal was first
noted to be jaundiced through visual assessment at 16.5 hours old, but a
bilirubin test was not done.
Cal’s skin was described to be jaundiced again through visual assessment
when he was 23 hours old, but a bilirubin test was not done. Cal was
discharged from the hospital when he was 36 hours and was described as
having head to toe jaundice, but a bilirubin test was not done. Neither was
his blood typed or a Coombes test performed.
The information we received about jaundice was a simple brochure that never
mentioned jaundice can cause brain damage. It was also suggested that we
put Cal in the window for sunlight.
We were assured that Cal’s jaundice was normal and not to worry. We
scheduled a routine follow up visit, for 7 days of age, with his
pediatrician.
On day 4 Cal started to breast feed with a weak suck and became lethargic.
I called the newborn nursery and told them that he was “still yellow,
lethargic and was feeding poorly.” They asked me if I was a “first time
mom” and then assured me there was no concern since sleepiness is to be
expected. They told me to unwrap him and tickle his feet and if that didn’t
work to call the pediatrician.
We immediately took Cal to the pediatrician and he noted the jaundice by visual assessment. A bilirubin
test was not done. We were told to wait 24 hours to see if he would
improve.
At 5 days of age, the pediatrician admitted Cal to the pediatric unit.
Cal’s bilirubin was tested for the first time and it was 34.6mg/dl. An
exchange transfusion, however, was not performed since the doctors recalled
a recent “raising of the bar” from 20mg/dl to 30 mg/dl.
Treatment was limited to phototherapy…and that phototherapy failed Cal.
On day 6 in the afternoon, Cal had a high pitched cry, respiratory
distress, increased tone and he started to arch his neck in a way that is
characteristic of opisthotonos; these behaviors were all acute symptoms of
kernicterus.
Little did I know that my newborn son was suffering brain damage before my
eyes and in my arms. I will be haunted by that memory and my failure to
protect him forever.
At 18 months of age Cal was diagnosed with classic, textbook kernicterus.
Cal has athetoid cerebral palsy throughout his body, neurosensory hearing
loss, enamel dysplasia on his front teeth and crossed eyes and other
abnormalities.
Today Cal cannot walk independently, his speech is impaired, he drools, and
he has uncontrollable movements of his arms and legs just to describe his
impairment a bit. When Cal gets sick he is reduced to the functional level
of a 6 month old. Despite his limitations, Cal is a beautiful and
inquisitive young man. He loves playing on the computer, swimming, his
sister and Pokemon! He also enjoys creating movies, short stories, and
poems.
Two and a half years after Cal’s birth we were blessed with the birth of
our daughter, Mackenzie. At 16.5 hours, exactly the same timing of jaundice
onset as Cal, jaundice was noticed. A bilirubin test was performed
immediately and phototherapy was deemed necessary and initiated. Today we
have a healthy daughter.
I was recently preparing a presentation that I often give to the health
care community about Cal’s story and he asked me why his sister didn’t have
kernicterus. I thought that was an excellent question and one that does not
have an easy answer. I am incapable of explaining to my son the
justification for his disability. It is precisely what motivates me to
advocate for change in our health care system.
Cal’s brain damage was totally preventable and is the result of a tragic
failure of our medical system. Unfortunately, the real tragedy is that
Cal’s story in NOT unique. His story has replayed itself several times over
the past decade.
News story about Cal and
Sue Sheridan in the Quincy Herald-Whig Newspaper
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Date:
March 28, 2007
Content source: National Center on Birth Defects and Developmental
Disabilities