May 17, 2004
Health care for
kids: One mother's ordeal
By Sally Sampson
MY DAUGHTER -- my
smart, sweet, beautiful, silly, maternal, and very
high maintenance 11-year-old daughter -- has been hospitalized 40 times
for pancreatitis, an illness so rare that when I type the word into my
computer, I am
prompted to check the spelling.
Soon after she
was born, it was clear when she cried sometimes that
she was in terrible pain. Doctors thought she had a milk allergy. They
thought I was neurotic. They thought she had colic. They thought I was
too demanding. They
thought she had the flu. Eventually she was diagnosed with chronic
recurrent idiopathic pancreatitis, which means that no one knows why
has pancreatitis but she gets it over and over and over and over again.
She has been
tested for HIV, cystic fibrosis, and diabetes. She has
had ERCPs, X-rays, ultrasounds, sphincterotomies, MRIs, and CAT scans.
She has seen allergists, herbalists, homeopaths, hypnotherapists,
therapists, pain specialists, surgeons, geneticists, ENT specialists,
and gastroenterologists too numerous to count.
I am more
familiar with the medical system than I ever thought possible
without actually attending medical school. So it was with great
and trepidation that I read the newly released report by The
"Quality of Health Care for Children and Adolescents: A Chartbook."
The truth is, although the Chartbook describes in great detail its
and the implications of those findings, I didn't need to read one word
of this report to
know that health care for children stinks.
What this report
did is make me realize that I wasn't crazy. It made
me realize that I am part of a larger community of unsatisfied
and perhaps if the medical world saw me as a consumer of their goods,
might take a sharper look. It is not acceptable that 33 percent of all
children with asthma get the wrong medication nor that the same amount
of children and adolescents with cystic fibrosis not have the amount of
monitoring visits they need. As a
cookbook writer, if my recipes failed 33 percent of the time, my
publisher would surely not reward me with another book contract.
It would be easy
to simply impugn the doctors, and I certainly have,
but the truth is that they too are frustrated and trapped in the same
system. It took the apology of one very brave and honest doctor to
that doctors go into medicine to cure illness and help kids. The
kinds of changes that are needed are systemic and that makes it all the
The list of
failings is chilling and not the least bit surprising:
Children aren't getting enough preventive care, nor are they immunized
in time. Their parents aren't being properly educated by doctors. They
are getting antibiotics
when none are indicated, and they are underusing drugs which are.
The medical mistakes are life-threatening. Disparities are huge among
and ethnic groups, as well as geographic. Children living with
are not getting adequate access to the kinds of organized care they
The list goes on. And on.
According to the
report, "About one of three parents reported that
the child's doctor or other health professional did not always
well. The implications: Improvements are needed to better meet parent
Interpersonal deficits in care may account for the perception of
inadequate time spent with the patient and parent. Greater attention
needs to be paid to the child's role in communications with health
Ha, I say. When
my daughter was 7, she struggled to let doctors know
what she needed. She placed a note on her hospital door: "Please," it
in huge letters, "Remember that I am a 7-year-old person not just a
Knock on the door. Wait for me to say `come in.' Call my mom `Sally.'
yourself. Say what you are here to do. Do not touch my belly. Do not
in front of the TV. Thank you."
We were so proud
of her ability to know what she needed; we thought
she was absolutely amazing. The first doctor who saw the note ripped it
off and pronounced, "You're not going to tell me what to do!"
The things that
are wrong with this picture are stunning. I call
these things I care about minutia but in truth, there is nothing more
than treating a child as a person who deserves respect. Perhaps if they
this little list, everything else would follow.
is the author of 12 cookbooks and a parent liaison
from Watertown for the National Initiative for Children's Healthcare