Our beautiful little girl, Charley, was born in September 2005.  Due to birth asphyxia (lack of oxygen shortly after her birth) she suffered a massive brain injury which has left her with multiple disabilities, including severe cerebral palsy.  She is blind, epileptic, and spastic tetraplegic (no purposeful movement of any limb, limited head control).  Because of her low truncal strength, Charley was also difficult to physically position and handle.

The cerebral palsy has caused Charley's spine to curve abnormally (scoliosis).  This happened very rapidly - going from virtually nothing to 70 degrees in just three months, shortly after her second birthday. 

To give an idea to those that don't know about the degrees, the suggested treatment is as follows...

20-30 degrees, the patient's spine is monitored closely for changes.

30-40 degrees, bracing is recommended

40+ degrees, treatment is usually surgical, meaning that rods are inserted either side of the spine permanently. 

 

With regards to the surgical option, if the patient has not yet gone through puberty and their body is still growing (as Charley's would have been for some years to come), multiple surgeries are needed (as often as three a year) using what are termed Growth Rods - rods that are extended surgically as the child grows until puberty ends and the spine growth ceases. 

This was not an acceptable option to us, so we agreed to try bracing.  Although correction is possible in some cases, no correction was anticipated.  The main idea of the bracing was to stabilise it at 70 degrees, hoping that it wouldn't worsen.  The bracing systems we were offered are designed essentially as a stall tactic for the multiple surgeries.  The hope is that if the child will tolerate it long enough to get through puberty, and therefore cessation of spinal growth, only one major surgery would be required, therefore avoiding as many multiple surgeries as possible.

A plaster cast was made of Charley's torso, and eight weeks later she was fitted with her brace.  The orthotics specialists had made a big effort to make it pretty - hers was pink with butterflies.  It was a fine piece of sculpturing, something that could easily have been an artwork.  But when I looked at it I saw a medieval contraption, a torture chamber, a hard, heavy piece of body armour.  We researched the TLSO (thoraco-lumbo-sacral-orthosis) bracing system offered, and discovered that compliance of brace wearing was poor due to discomfort.  We read personal stories from children with scoliosis of differing severity (www.spinekids.com) and heard their overall dissatisfaction.  For these and many other reasons, we rejected it's use on our little girl.

Charley would have needed to wear the brace 23 hours a day - she has not been in it for 23 minutes.

We searched for current alternatives and found nothing appropriate existed.  We asked the specialist for an opinion on a corset based idea.  We were told that families have tried before and "failed, failed, failed", and that decades of medical research and development have proven that it MUST be a solid, rigid structure.  Going against medical advice, we decided to experiment ourselves.  Knowing the braces were not an option for us, and being told that surgeries would become unavoidable, we felt we had nothing to lose.  Our initial aim was to create a new way of supporting Charley's positioning.  We wanted something comfortable, discreet, simple to use, and with the ability to adjust to her changing body shape as we repositioned her throughout the day. 

Armed with a background knowledge in structural engineering and a good dose of thought for our daughter's support requirements, we developed the CharleyWrap - a boned "corset" of sorts.  Every aspect of the design has been well thought out - from the choice of fabrics used, the multi function fastening system, to the specific ratio, placement and properties of the boning. 

From the first minute Charley wore this device, we saw an incredible difference to her truncal support.  Her baby brother, Zak, was playing in the washing basket at the time.  I got him to move to one end so that Charley could fit in too, and for the first time I was able to support just her head, freeing up one hand to pass a toy between the two children - a small thing to most, but a truly magical moment for us!  We knew then that we were really on to something.

Over time, we found that Charley appeared happier whilst wearing her new support, no doubt feeling more secure.  It didn't appear to be any worse than any other undergarment one might wear.  It didn't create pressure sores, and didn't restrict her breathing.  We were able to realign her recently offset lateral supports in her wheelchair.  Because the device wasn't bulky, she remained able to utilise her high chair, standing frame and car seat without replacements being necessary.  As she was able to comfortably wear it all day and all night, she no longer needed assistance with positioning aids in bed.  Another advantage over other bracing devices was that, due to it's discreet design, no-one could even tell she was wearing it.

We didn't dare hope for the CharleyWrap to improve the spine.  It was a great surprise to discover that it did!  When first fitted, Charley's scoliosis went from 70 degrees to 50.  Three months later it went to 40 degrees.  Seven months after that it was at 28 - as the paediatric orthopaedic surgeon at Starship Hospital has recently said, her sagittal alignment is now almost perfect.  (See x-rays below, and letter from Starship Hospital Spine Specialist)

March 2008-unsupported	May 2008-TLSO brace	August 2008-CharleyWrap	March 2009-CharleyWrap