Our daughter Bridget was born on the 22.2.01.  She is the fourth child in our family and her two brothers and one sister were over the moon at having a new addition to the family.   

Bridget spent her first year drowning in the attention of her siblings.  She sat on her own at about 8 months and it was at this time that I noticed she seemed to sit more on her left buttock.  Looking back at photos she also had her head turned to the right in most photos, though I did not pick that up at the time.  When she was viewed from the back while sitting, it looked as though her spine curved towards the left side. 

At 10 months I took her to our GP and then to a paediatrician.  The paediatrician said the curve was an optical illusion and not worth xraying.  I left the consultation relieved but continued to watch her spine as she was sitting or in the bath. At 16 months Bridget was still not walking.  She had developed a bottom shuffling technique which involved leaning to the left and using her left hand behind her and her right hand at the front to propel herself quite quickly around the floor.  

 I returned to the paediatrician when Bridget was about 18 months.  She was still bottom shuffling and when sitting had creases visible on one side of her waist.  I pointed this out to the paediatrician but she said she could have built up muscles on one side of her body from bottom shuffling.  She felt the curve was an illusion created by her posture and advised me not to be concerned about it.    

Bridget finally walked at 22 months.  As she progressed from the first toddling steps to competent walking and running, her gait remained uneven.  She seemed to weight bear more on the left leg and her right shoulder was lower than her left.  When standing and in swimming togs, we could clearly see a curve in her spine. 

I returned to our GP when Bridget was almost three.  I showed him the curve in her spine and he agreed with me that it was unusual.  He referred me to another paediatrician.  This paediatrician felt there was nothing to worry about, as he believed her apparent curve was postural and told me we could xray if I liked but he wouldn’t foresee any need for intervention. 

The xray revealed a 38 degree thoracolumbar curve.  We were referred to a spinal surgeon who arranged for her to have an MRI as he felt sure there must be some neurological problem, which was contributing to her scoliosis.  This doctor explained that while she was under anaesthetic she would be cast for a TLSO brace. 

The MRI and a subsequent consultation with a paediatric neurologist could find no neuromuscular involvement and with no vertebral abnormalities present, Bridget’s curve appeared to be Infantile Idiopathic. 

Six weeks later we returned to the Spinal Surgeon to learn about Bridget’s brace.  He told us that the brace would not correct the curve nor stop its progression and he estimated by the time Bridget was 10 years old the curve would be so large and the resultant deformity so disfiguring that he would be operating to fuse her spine though she would be far from skeletally mature.  He said without the brace the curve would progress much more quickly and he estimated he would be fusing her spine at 7.  He explained that as the spine could not grow at the fused area this would result in her having a short trunk and long arms and legs like a “daddy long legs spider.”  

Our family was horrified by this prognosis.   We sought the opinion of another spinal surgeon in Brisbane as well as consulting with two others in Sydney and Melbourne.  Each emphasised how rare Infantile Idiopathic Scoliosis is and mentioned that it was more prevalent in the UK.  

 I understood that the treatment Bridget was receiving was the standard treatment in Australia but was keen to research how Infantile Idiopathic Scoliosis was treated in other countries.  I started with the UK. The Scoliosis Association of the UK website www.sauk.org.uk explained how Infantile Scoliosis could be corrected if treated early enough with a series of plaster casts. 

At about the same time I discovered and joined ISOP’s CAST Support Group after reading Olivia’s Story, Moriah’s Story and Tyler’s Story on www.infantilescoliosis.org.   For the first time I was able to make contact with other parents of children with Infantile Scoliosis and gain support and information from their experiences. ISOP sent me Miss Mehta’s video of early treatment and I was impressed with her thorough and logical explanation as well as her positive results.  

My research also led me to the Australian Scoliosis Association and I read a reader’s story of one baby’s successful treatment using serial plaster casts applied in the U.K. at Stanmore Hospital in England. By contacting the Scoliosis Association in Australia, I was able to confirm that serial plaster casting was not available as a treatment option in Australia. 

In October 2004 we saw the orthopaedic surgeon in England.  He applied the first of Bridget’s plaster casts under general anaesthetic.  We were delighted to see that in her cast her curve improved from 38 degrees to 21degrees. 

Her second cast was applied in Jan 2005.  In this cast Bridget’s curve was 29 degrees. 

At about this time, we applied and were accepted for treatment at Shriners Hospital in Salt Lake City and a chance to participate in the Early Treatment Trial Project.  In May 2005, the ISOP group brought Dr Min Mehta to this hospital to participate in the first early treatment trial which involved a group of 16 patients and numerous doctors and orthotists who attended the conference to hear Dr Mehta’s review of each case and see her demonstrate the early casting procedure on 6 of the children reviewed. 

Bridget returned to Salt Lake City in August 2005 when her fourth cast was applied.  In this cast her curve was reduced to 8 degrees.  Her rotation was virtually nil and her resultant rib hump was completely gone.   

Bridget wore her series of 4 casts for 13 months.  Throughout this time she was a very active and happy child who loved riding her bike. She attended kindergarten and survived two very long and hot Brisbane summers.   

In November, 2005 Bridget was diagnosed with the connective tissue disorder, Ehlers Danlos Syndrome by her Geneticist, in Brisbane.  This explained why Bridget’s curve was so flexible that it could be corrected to 8 degrees in a cast, yet it returned to 28 degrees when the cast was removed.  On our return to Salt Lake City in November, Bridget’s orthopaedic surgeon, decided to try Bridget in a removable brace since she needed to build up her trunk muscles to see whether increasing muscle tone would help hold her spine in the corrected position that the casting had achieved. 

A brace was molded for her in Salt Lake City and in this brace her spine was held at 10 degrees.  It was discovered that she also has a leg length difference of 2cm which was corrected with an orthotic and a heel raise.  On our return to Brisbane we began a vigorous and intensive Physiotherapy program to try to build her trunk strength and muscle tone.  

We returned to Salt Lake City again in April 2006.  We were very encouraged to see that Bridget’s curve hadn’t progressed since she had been out of her cast.  Another brace was made for her as she had outgrown the previous brace. In this brace her curve is held at 10 degrees.  At this appointment it was discovered that Bridget has one extra rib as well as one wedge shaped vertebrae in the base of her spine.  This abnormality coupled with her connective tissue disorder explains why her scoliosis has occurred, and we no longer label her scoliosis “idiopathic”. 

We realize that because of her connective tissue disorder it is unlikely that Bridget’s curve can be completely resolved. However, through her 13 months of casts as well as custom made braces in conjunction with swimming and exercise as well as training Bridget in posture maintenance, we are hopeful that we can minimize the progression of her curve as she grows.   Although it is an enormous and expensive undertaking for our family to pursue this treatment, it is so reassuring to see her amazing progress so far.   

We realize there are no guarantees for our little Bridget but we, as a family need to feel we have tried our best to find a treatment for her that will give her the best chance of a normal life without an ever increasing scoliosis.   

We hope that the Australian spinal specialists will be willing to follow our daughter’s progress with a view to learning about applying serial plaster casts early, so that other progressive Infantile Scoliosis children do not have to travel across the world to access this treatment.   

We are very grateful to the Shriners Intermountain Hospital and her current orthopaedic surgeon for the chance to continue our treatment.  We owe the progress we have made so far to the ISOP group for the information about this treatment as well as the support and inspiration given to us from the other parents and children on the group. 

Thanks,  

Bernadette (mother of Bridget)

Bert.daz@bigpond.net.au