Informing your child
Mark Twain once said, "When in doubt, tell the truth."
If your child is an infant or very young when first diagnosed with
hydrocephalus, and she is fortunate not to have any shunt
complications until later in her life, the question arises, "When do I
tell my child about her condition?" The obvious answer is to explain
the condition to her when she is old enough to begin understanding. If
you are unsure about when or how to explain this, consult with your
child's pediatrician or neurosurgeon and ask for advice. Do not wait
to tell your child about her condition until there is a need for
another shunt revision. This could traumatize your child.
I knew I'd been in the hospital for something when I was little,
but was unaware of what actually happened to me. I had strange
memories as a young child. I was in a big crib. My arms were tied to
the side rails. The air was filled with the smell of rubbing
alcohol. I was wearing a knit cap. I had the vivid memory of my mother
crying as I hugged her, telling her, "I'm okay, Mommy." It wasn't
until I was eight or nine years old that I found what I thought looked
like a mosquito bite just above my hair line. As I took a closer look,
the mark on my head wasn't so small after all. The scar went all the
way across the front of my head. I then found more all over my
scalp. I remember being very confused and upset by what I had
discovered. What had happened to me? My parents then told me
everything they knew in terms they thought I'd understand.
If you explain hydrocephalus to your child in terms she can
understand, she will have a healthier attitude toward the condition
and be able to better cope with it later in life.
I started when Carolyn was two to three. It happened that one of
her shunt sites on her head got bumped and hurt. I called it her
"shunt bump," and went on to have a long conversation with her about
how she got the bump. I explained that the doctor put it there. As she
got older, we went on to talk about the shunt line that is visible on
her chest and that it was to drain fluid from her brain. That went
along with the fact that the doctor looked at CT scans to see how well
the shunt was working and what her brain looked like. We certainly
surprised the neurosurgeon on a routine visit when Carolyn told him
she knew he was the one who put the bumps on her head.
Since most children have vivid imaginations and cope differently than
adults, it is important to talk to them truthfully about hydrocephalus
in terms that they will understand. Medical terminology can be very
complex, and it is important that the condition of hydrocephalus be
explained to your child in a simple manner, using terms that are easy
for the child to comprehend.
As a parent, you may be sorting through your own emotions, and having
to provide an explanation to your child may prove to be
overwhelming. If this is the case, it might be wise to ask your
child's neurosurgeon to help explain the condition to your child with
both parents present. One suggestion would be to create a forum, where
the neurosurgeon explains the condition to the child and allows her to
ask questions along the way. With the parents present, the child will
be more relaxed and secure in the knowledge that everything will be
okay. If your child's neurosurgeon is not able to talk with your child
about hydrocephalus, ask the neurosurgeon if there is a counselor or
neurological psychologist on staff who could.
Another suggestion is to find age-appropriate literature to help
explain the condition to your child. Just Like Any Other Beagle
is a coloring book which is published by Cordis Corporation, a shunt
manufacturer. This coloring book explains what hydrocephalus is and
how it is treated. The Human Brain Coloring Book, published by
HarperPerennial, provides detailed illustrations of the structure of
the brain, including the ventricular system and an explanation about
cerebrospinal fluid. Ask your child's neurosurgeon or neurological
psychologist for recommended age-appropriate books.
Reading and talking about hydrocephalus with your child will allow her
to be more knowledgeable about her condition and helps her to dispel
any fears or misconceptions she may have.