IAC Home page
|Issue Number 21
September 14, 1998
CONTENTS OF THIS ISSUE
1. STORY #2: PARENT OF CHILD WITH HBV TESTIFIES ABOUT IMPORTANCE OF HEPATITIS B
Editor's note: The Immunization Action Coalition is collecting stories of people who have
suffered or died from vaccine-preventable diseases. This is Story #2.
It is stories like this one that can help us get out an urgent
message about the importance of vaccination.
Please let us know if you have personal stories, or if you know of stories that have
appeared in the media, of the suffering that occurred in families because someone wasn't
immunized. We are also requesting case reports to help us illustrate the morbidity and
mortality caused by vaccine-preventable diseases.
We look forward to sharing these unfortunate stories and case reports that can help save
lives. Please e-mail us at firstname.lastname@example.org
if you can help us. Thanks!
If you would like to read Story #1, just click here, http://www.immunize.org/genr.d/issue14.htm,
and scroll down to item #3.
September 14, 1998
STORY #2: PARENT OF CHILD WITH HBV TESTIFIES ABOUT IMPORTANCE OF HEPATITIS B VACCINATION
A parent whose son is chronically infected with the hepatitis B virus delivered the
following testimony in 1997 at a public hearing on the implementation of a hepatitis B
school entry law.
The parent spoke on a personal level of the pain her entire family has suffered because of
one family member's chronic illness. She concluded by urging parents to learn as much as
they can about hepatitis B so that they can make truly informed decisions regarding school
immunization and how to best protect their children.
The testimony is as follows:
I'm here to talk about my family. I'm not here to add to the list of statistics related to
immunization issues. I'm here to personalize them, to bring them to a level that you can
relate to from the heart rather than from a business, political, or clinical standpoint.
My husband and I have three young children. One is a hepatitis B carrier. Although he is
asymptomatic, biopsies at ages 3 and 4 confirmed that he already has cirrhosis. He did not
respond to a 7-month course of interferon, a form of chemotherapy, and no other treatment
has been available for him.
There is a four-letter "F" word which we try to shield our children from. It's
something they shouldn't know anything about at such a young age. The word is Fear. Fear
of social repercussions, fear of financial ruin, fear of sickness, death and loss.
You may have noticed that I have not provided our family name. I can't. The first
thing hep B families learn, usually after rejection by friends or family, is to go to
extreme lengths to protect their child's privacy. We desperately want to reach out for
comfort when we learn our child has an incurable illness, but we can't. Local hospitals
offer support groups for parents of children with cancer, but no help is available for
parents of children who have life-threatening infectious diseases.
We feel an overwhelming need to warn day care workers, teachers, Sunday school caretakers,
babysitters, playmates and their parents that extra care needs to be exercised if our
child scrapes his knee, bites or is bitten, has a bloody nose, and so on. We want to
tell everyone to get the shots. Yet we agonize over the negative consequences of
"telling"....Will our child be treated fairly? Will he be ostracized on the
playground? Will we ever find a babysitter? Will he have any friends or will our children
be singled out as the kids to avoid? Will information given to the school nurse in
confidence wind up as the topic of conversation at a PTA meeting? There are discrimination
and disability laws that guarantee our child a public education, but there are no laws to
protect my child's heart....
My husband and I attended a school meeting regarding one of our other children. During
casual conversation, a mom mentioned that she'd heard that there was a child with hep B in
our school district. She went on to tell the other concerned parents that she had visited
the school superintendent in an effort to identify the child so that she could better
protect her son. We sat paralyzed in silence, waiting for glances to turn in our direction
(they didn't!), and all I could think was, get your kid the shots if you want to protect
him. We supervise our child's play, we coach his soccer games, we are there as much as
possible in order to protect other people's children. But it's obviously impossible to
continue this vigilance as the children grow older. A neighbor tried to bandage our
child's bleeding cut and I body slammed her away. She thinks I'm overprotective. She has
no idea I was protecting her. No one else should have to live with this virus. It's
We worry about our ability to provide the best care for our child. His interferon
treatment cost well over $20,000 and only a portion was covered by insurance. We are
self-employed and we watched our health insurance premiums triple. We can't change
carriers because we fear he could become sick or need a transplant during the
"pre-existing condition exemption period" with a new policy. If no cure or
control is found in the very near future, the likelihood that he will need a
transplant is high. We have been warned that transplant and post-transplant care will most
likely ruin us financially, and it is only a temporary solution. The virus would
eventually attack the new liver as well. We wonder whether we will be able to afford to
put our children through college, how we will manage to retire.
I call this virus IT. Capital I, capital T. Stephen King fans will understand why. IT
invades our lives, our thoughts, our spiritual beliefs, no matter what defenses we erect.
I watch my happy children playing and IT reminds me that we will soon have to tell my son
that he has a serious illness. Whenever he doesn't feel well, I wonder, "Is this
IT"? How long will IT allow him to play the sports he loves? How will IT affect his
school performance? The quality and length of my son's life are frightening unknowns, but
statistics related to the progression and characteristics of this disease make it
difficult to be optimistic. You can all look at your young children and fantasize about
their senior proms and weddings. I cannot.
My son is a leader. He is clever, creative, charming. He
is very protective of our other children and they look up to him. I fear the effect IT
will have on his siblings, worry about how they will deal with their brother's illness, or
worse. I fear that I will watch my child die, the worst possible thing that can happen to
a parent. Doctors and parents have no control over the course this illness chooses within
our children's bodies. However, the availability of the hep B vaccine allows us to control
the spread of the disease to others. No other family should ever have to experience this
pain. Three shots can prevent IT.
Hepatitis B is transmitted primarily through blood and sexual contact with infected
persons. There are young, asymptomatic carriers who have not yet been diagnosed.
Infected children will be socializing with and dating your children. It is clear to me
that those of you who oppose immunizing our state's children are well informed about
vaccine composition and side effects. I beg you to learn as much about the hepatitis B
virus and disease progression as well. Only then will you be able to make a truly informed
decision regarding school immunizations and how to best protect your children.