To Measure or Not To Measure?

Recently I was asked to see a 13 year old boy named Seb to re-measure his body shape with the Goldsmith Indices of Body Symmetry (GIoBS). Seb has been sleeping in supported supine lying for 3 years now, after he had already developed a significant scoliosis and rib hump. Recently Seb attended the scoliosis clinic at the hospital and his mother and therapist were told that his scoliosis had deteriorated significantly. His mother (Lynn) was devastated and felt at a loss.

Despite providing 24-hour postural care (in lying, sitting and standing) his scoliosis is apparently still getting worse as confirmed by X-Ray! This led Lynn to doubt herself as well as the usefulness and effectiveness of postural care. She questioned whether it was worthwhile to continue?

Seb’s last GIoBS measurement was approximately 15 months ago. By then he was able to sleep all night in a supported supine position. During the day Seb uses a tilt in space wheelchair with custom contoured seat and back. Lynn has been very good at positioning Seb in his supported lying system and only needed minor guidance with regards to the chest de-rotation. However he had completely outgrown his wheelchair. His primary therapist was well aware of this and is waiting for funding for a new wheelchair and body support system.

I saw Seb at his school to re-measure him. When he was wheeled in his position in his wheelchair was not great. He was sliding out, slumped and leaning badly to the side. On examination his custom contoured seat and back were too small and contributed significantly to his bad sitting position.
I asked the therapist, who attended the scoliosis clinic, if she knew how the X-ray at the scoliosis clinic was taken. She told me that it was taken seated in his wheelchair, without any re-posturing (repositioning).

We completed the GIoBS for Seb and we found that despite his significant growth and poor position in sitting for most of the day that his measurements where slightly better than 15 month ago.
His chest was slightly less rotated. His right to left ratio went from 0.71 to 0.74 (1=Symmetry) and his depth to width/ratio remained the same at 0.65, while his windswept index improved for 6.25 to 3.35. These measures paint a much more positive picture and demonstrated some improvement despite his growth spurt and seating problems.

Lynn was obviously relieved and encouraged by these findings and is now determined to continue the supported supine lying. It is not only protecting his trunk, it is also protecting his hips. Currently Seb is still able to take a few steps and complete standing transfers with assistance from his mother. It is always difficult to predict what would have happened if 24-hour postural care was not in place for Seb or what could have happened if Lynn had decided on the basis of a badly taken X-ray to discontinue supported lying. But it is even more important how a message is delivered.

So let’s now think again about the title. To measure or not to measure?