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 bare 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. I gleaned this information from the SAUK site as it was in 2004. I notice that it has since changed and no longer mentions infantile scoliosis as a separate and curable condition using serial plaster casts.
To apply these casts the child is anaesthetised and suspended on a paediatric traction table. The spine is gently manipulated and placed in a corrected position. The plaster cast is then applied to hold the spine in that position. A widely trimmed mushroom shaped window is left trimmed around the tummy/chest to allow for expansion (chest expamsion window). Another hole is left selectively at the back over the concaved flattened side of the ribs so that the child’s own breathing and laughing encourage symmetrical growth. This alters the direction of the spine and allows it to grow in a straightened position. The cast is changed every three months and the process repeated until the curve has been corrected.
It was emphasized that it is the growth of the spine while it is held in the corrected position that ensures that it stays straight and never needs fusion. For this reason the best and quickest results have been obtained in children under two years as it is at this age that the most rapid rate of growth occurs. All this information I learned from reading the SAUK website as it was at that time and from speaking to Dr Mehta on the phone.
Dr Min Mehta has been successfully using her Early Treatment casting technique in the UK for over 30 years.
I sent Bridget’s xrays to Dr Min Mehta. After viewing Bridget’s xrays and photographs Dr Min Mehta said she believed 18 months of serial plaster casts changed every three months would cure Bridget’s scoliosis but only if treatment was started straight away. She recommended we see a specialist at the Royal National Orthopaedic Hospital in Stanmore, England since she had recently retired from NHS practice.
It was about this time that I read Ella’s Story on the Scoliosis Associan of Australia (SAA) website. I contacted them immediately to see if there was any possibility that serial plaster casting was being used to treat Infantile Scoliosis in Australia. Ella was born in the UK and had since returned to Australia. Ella was casted between 6 months and 14 months by Dr Mehta just before Miss Mehta retired. She is now 13 yrs old and has remained straight. At 6 months Ella had a 60 degree curve. .
In October 2004 we saw the pediatric spine specialist at the RNOH, Stanmore. 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.
Bridget wore her first cast for almost three months. She was a very active and happy child who loved jumping on the trampoline and riding her bike. Wearing a plaster cast did not restrict these activities. On January 9th 2005 we returned to England to have her plaster removed and her second cast applied. At this time I met with Dr Mehta and showed her Bridget’s cast that was applied by the specialist at the hospital from which she recently retired. Miss Mehta was disappointed to see that the specialist was not using the correct mushroom shaped windows to prevent barrel shaped ribs.
At this point, I had made contact with Heather Hyatt, ISOP and the CAST group. I applied to have Bridget included in the first ever ETTP (Early Treatment Trial Project) organized by ISOP at Shriners Salt Lake City. Dr Mehta travelled to SLC to train staff and demonstrate her method of Early Treatment w/ modified EDF casting using a group of patients who were lucky enough to be the first to be treated with this method in the USA. We were very fortunate to have Bridget accepted into this group in May 2005.
Bridget had 14 months of casts from aged 3 yrs 7 months to 4 yrs 9 months. During that time her curve went from 38 degrees to 8 degrees in cast but her curve would go back to 25 degrees out of cast. The casts totally got rid of her rotation and rib hump. At this time she was diagnosed with a connective tissue disorder,
At this point with the Doctors and physios talking together we decided to change to a brace and combine aggressive bracing with an exercise (core strength) program and posture training.
For the last 8 years we have travelled to Salt Lake City every 6 months to have custom fitted braces and shoe orthotics made for Bridget. (who also has a leg length difference) She currently has a providence brace for night time and a modified Boston brace based on the Mehta style Cast with same mushroom shaped window at the front.
Bridget is now almost 12 and a half. She is 155cm tall and enjoys swimming, playing netball and the same active life as any 12 year old. She still has a double curve which has increased over the years (52 thoracic and 42 lumbar) but we are hoping to avoid surgery (fingers crossed) depending how much growing she has left and what her curves do. At the moment, thanks to the hard work of Drs and physios over the years she has no pain, minimal deformity and a wonderful quality of life.
I would dearly have loved the opportunity to cast under 2 when we had the best chance of achieving a permanent cure like Ella in England and the 100s of kids now cured in the USA thanks to Dr Mehta’s treatment.