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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
