Curvebusters: A Scoliosis Support Group for Patients and Their Families
|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.