Wednesday, April 27, 2016

More letter writting

Over the past month, we have found that we are in a really difficult position with our spinal team. We were referred to the most experienced spinal surgeon at The Children's Hospital at Westmead, but he currently cannot perform surgery because he lacks adequate spinal monitoring for the surgeries. We are trying to work through the various possibilities to find an acceptable solution. Hopefully we have enough time and enough options that Madeline's care is not seriously compromised. Our surgeon encouraged us to write some letters to the Minister for Health, as well as to our representatives, so I sent off the following letter along with a photo of Madeline.

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Dear Minister,

I am the mother of three daughters, two of whom have diastrophic dysplasia, a rare and disabling form of dwarfism. My daughters were all born in Hong Kong but are Australian by descent. In December 2014, we moved back to Sydney from Hong Kong and they are currently treated at The Children's Hospital at Westmead (CHW). 

Many people with diastrophic dysplasia are affected by severe kyphoscoliosis (curvature of the spine) and will require surgery at some stage in their childhood. My daughter's (Madeline) kyphoscoliosis is in the upper thoracic region (between her shoulders) and I've been told it will be an extremely complex surgery requiring the most highly skilled surgeons available. We were referred to Dr Andrew Cree and have been told by other members of the spinal orthopedic team that no other surgeon at CHW has the expertise that we need, and that we would be compromising my daughters' care to see a less experienced surgeon.

When we recently met with Dr Cree, he told me that he is unable continue with my daughters' cases as he currently does not have the requisite staff to provide adequate spinal monitoring during surgery. The doctor who was previously doing the spinal monitoring has resigned so Dr Cree is currently using a consultant. However, this consultant is not experienced enough to handle the complexity of my daughter's case without the very real possibility of causing a spinal cord injury and potentially resulting in permanent paralysis for my daughter. It will take Dr Cree some time to find a suitable replacement and Madeline's surgery possibly cannot wait that long.

Dr Cree has told me that one alternative would be transferring to another doctor at CHW - however, I have previously been told that they do not have the expertise we require, and so I am hesitant to do so. Other alternatives may be seeking treatment in Melbourne, or with our original doctors in Hong Kong - however these are costly and may require significant periods of time away from home and out of school. I asked about the possibility of having the surgery in a private hospital and while this would have more optimal spinal monitoring, Madeline is not yet 10 years old or 30kg, which is a prerequisite for intensive care in the private hospital. I have advised Dr Cree that my preference (and what I believe would be in the best interest of Madeline) is if we remain with him and find some way that he is able to perform the surgery in Westmead with adequate spinal monitoring.

I find it appalling that the most experienced spinal surgeon at one of the most highly respected children's hospitals in Australia would find himself in this predicament. I do not understand all of the bureaucratic policies regarding consultants, but presumably there are other experienced spinal monitoring doctors available, if transferring to another doctor at CHW would solve the problem. Also presumably there are other experienced spinal monitoring doctors available in the private sector, if a private hospital would have been an option if it were not for the issues with intensive care. I urge you to work on a resolution to this issue as soon as possible so that Dr Cree is able to perform the kind of complex spinal surgeries that children like Madeline need in the near future.

For Madeline, this is an urgent matter. Delaying treatment will result in further deformity of her spine placing pressure on her heart and lungs. Without treatment, a spinal cord injury is highly likely, greatly increasing the degree of Madeline’s disability. 

Please do not hesitate to contact me to discuss these issues further,

Yours sincerely,

Nicole

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