|
|
 |
Unprotected People Reports: Hepatitis B |
|
Parent of Child with HBV Testifies about Importance of Hepatitis B Vaccination |
|
| Click here for a fully-formatted PDF version
of this report |
|
|
|
| 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
preventable.
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.
A Parent
|
|
| 9/14/98 • REPORT #2 |
|
| Disclaimer: The Immunization Action Coalition (IAC) publishes
Unprotected People Reports for the purpose of making them available
for our readers' review. We have not verified the content of this
report. |
|
A-Z