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| Scoliosis
is a common thread for the 25 or so people who have
gathered at a recent meeting. Patients, former patients
and their families attend Curvebusters monthly meetings
at Shriners Hospitals for Children to lend support to
one another. Some members of the group share hugs while
for some it is their first meeting. One set of parents
is attending without their daughter because "she (their
daughter) doesn't want to know all the details." |
Barbara
McHale (left) and her daughter Gretchen use a spine
model to explain scoliosis to the group. |
Barbara
McHale started Curvebusters 13 years ago, just after her
daughter Gretchen had scoliosis surgery. Barbara says, "When
Gretchen had her surgery, there really wasn't any support
group, there were no parents or other kids to talk to. I
went to Dr. Randy Betz, the surgeon at Shriners who would
perform the surgery on my daughter and said I felt there
was a need for a support group because there were so many
questions." Barbara and Gretchen have both volunteered to
devote time and energy to keep this program going.
Many
of you may be wondering just what scoliosis is. Scoliosis
is a side-to-side or lateral curve in the spine. A normal
spine appears straight when viewed from the back. With scoliosis,
one shoulder may be higher than the other, one shoulder
blade may stick out a little further than the other, the
waist or hips may be uneven and when the child bends forward,
there may be a prominence or fullness on one side of the
back. Sometimes a curve can be treated with a brace to halt
curve progression. In more severe cases surgery may be necessary.
Barbara
likes to meet patients and their families who have just
been told they are going to have surgery. As she says, "We
like to work with the families about 4 months prior to surgery.
That allows us to review all our materials. It also gives
the families time to listen to others who may have had similar
experiences."
There
are many things to think about regarding scoliosis. The
first decision may be whether or not to have the surgery.
As one teen says, "My curve is 35 degrees. My parents and
I are here to learn more about the surgery and then make
a decision."
"Parents
may feel guilt," states Barbara. "Parents often may feel
guilty in putting their child through this surgery. Their
child may never have been in a hospital, had stitches or
a broken bone. In essence, parents are giving permission
for this surgery to happen. You have to be able to work
with the family to help them cope." Sometimes there are
questions about surgery, pain, blood donation, or when normal
activities may resume.
Barbara
also likes to inform surgery patients about being on a respirator.
"The idea of being on a respirator can be very scary. Typically
a patient may need to be on a respirator for 24 hours, although
some may need it longer or not at all."
Curvebusters
has changed over the years. According to Gretchen, "the
program has improved. There is more loyalty; there are people
that attend meetings who had their surgeries more than 8
years ago." Barbara adds, "We're here to help, but we ask
that after you've had surgery you come and provide support
for others." Another change which has affected Curvebusters
is the Internet. Kids feel more comfortable "e-mailing"
each other rather than talking on the phone.
It
has helped improve communication among peers. As the meeting
progresses, one of the teens wonders about how much she'll
be able to bend after surgery. Gretchen shows the group
a deep bend to the right as if to say 'there is life after
surgery.'
Curvebusters,
a support group for scoliosis patients and their families,
meets monthly at Shriners Hospitals for Children, Philadelphia.
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