Andrew Berry, who produces the newsletter for the OI support group in Australia, has allowed us to reprint some of his articles. This one from November 1995 documents the experience of an Australian family who traveled with their daughter to England for basilar impression surgery.

Jodie's Trip to England


Copyright 1995, Andrew Berry, all rights reserved.

[Note---this text version of the story excludes figures. Dollar amounts
referred to in the article are Australian dollars (AUS $1 ~= US $0.75)]

Most of you will remember the media-sponsored appeal for funds to send
Jodie Bartrim and her family to England for a life-saving operation. At
our last OI support group meeting, Jodie's stepfather Dean Roberts spoke
about their experiences, both in the fund-raising effort and the
subsequent trip to England.

Jodie was suffering from a condition known as Basilar Impression. Her
early symptoms of headaches, nausea and loss of balance were due to a
build up of fluid in the brain. Usually, this fluid is drained off the
brain through a shute that runs down behind the spinal column as shown
in Figure 1. When Basilar Impression occurs, upward pressure on the
spine pushes the spinal column up into the brain, and vertebrae in the
neck are compressed sometimes blocking the passage of fluid as shown in
figure 2. Initially, it was sufficient to treat Jodie's symptoms by
inserting a `shunt' (an external tube) that allowed the fluid to
bypass the compressed vertebrae. As the depth of the basilar impression
increased, the symptoms became significantly worse and it became clear
that immediate surgery was necessary to save Jodie's life.

Surgery to correct basilar compression is performed in Australia for
cases related to other causes (i.e. not OI). The surgery required for
OI patients is significantly more complicated and must be performed in
England. The costs are significant, with airfares, surgery fees,
hospital fees and accomodation to be covered. Government assistance is
available through `Act of Grace' provisions in our laws, but this
only covers certain costs of the patient and a single carer. Given
Jodie's age (12) and the stress associated with caring for a child in
significant pain 24 hours a day, the Roberts decided that the whole
family should be there for support. Their experience has convinced them
that this decision was and continues to be crucial to Jodie's successful
and speedy recovery.

Dean and Julie (Jodie's mother) set about the task of raising sufficient
funds to take the whole family to England. They initially asked a local
radio station to donate prizes for raffles. The radio station, believing
their cause to be worthwhile, launched a large-scale appeal to the
general public, and was joined by a local television station. The money
was consequently raised very quickly, and Jodie and her family were on
their way to England.

At our meeting, Dean cautioned the group on the dangers of `going
public'. They received numerous crank calls, and a number of
journalists questioned them aggressively about the way the donated money
was being used, in the hope of uncovering a sinister motive. Dean said
that it was important to manage the funds very carefully to ensure that
both the government and the public were happy. They were fortunate in
that a friend in the legal profession was able to establish an
appropriate trust fund for the donated money.

Raising the money proved to be the easier part of their experience. The
operation to correct Jodie's condition takes 14 hours and involves 8
specialised surgeons. It was decided by the chief surgeon (Dr Crockard,
who Dean praised very highly) that the operation should be split into
two 7 hour segments---the first to remove the top two vertebrae putting
pressure on the brain, and the second to insert a metal support plate to
prevent any recurrence of basilar impression. The support plate was
wired to the spine to provide additional strength. The result of these
two operations is illustrated in Figure 3 (note that Dean did not
discuss how the blockage caused by the compressed vertebrae was
cleared).

The first part of the operation involved splitting Jodie's jaw
vertically and removing it to access the spinal column. The top two
vertebrae were then removed through her mouth. This was the riskier part
of the operation, since there was a significant risk of infection and
bleeding, either of which could cause serious problems and possibly
death. The surgery also involved inserting a tracheometry (a hole in the
throat for breathing) to allow healing of the repaired jaw. The
operation was successful, although Jodie spent 3 days in intensive care
before moving into a regular ward. On her first day in the regular ward
there was a dangerous moment when the `trachy' became temporarily
blocked and prevented her from breathing. That drama overcome, she
spent 4 days in the regular ward before the second operation took place.

The second operation successfully inserted the plate to support Jodie's
brain and spinal column. Bone shavings taken from her pelvis were also
inserted between the vertebrae for `packing'. Jodie spent a
further 3 days recovering in intensive care after the operation. Due to
bedsores she developed during the previous week, Jodie had to be rolled
over every 3 hours, which was an incredibly painful and difficult
procedure (usually managed by Dean). On returning to the regular ward,
Jodie was forced to stand up for at least 30 minutes each day to
encourage bone growth (weight-bearing is particularly beneficial). This
was also incredibly painful, and a distressing experience for both Jodie
and her parents. Jodie spent a further 5 weeks in hospital, then
returned to Australia with her family.

The actual flights to and from England were quite difficult, and in
hindsight, Dean suggested that breaking the journey in Singapore would
have made the flights far easier to cope with. Dean also said that
business class travel is essential to provide sufficient comfort for the
patient.

At our meeting, Dean praised the nursing staff of the hospital, but
commented that they were not familiar with OI and much of Jodie's care
was carried out by him and Julie. Jodie's time in hospital was extremely
stressful for both of them, and they found that each of them had
complementary strengths that were necessary to support Jodie through her
ordeal.

The eventual cost of the trip was quite staggering, coming to a total of
$120,000. This includes surgical costs, accomodation near the hospital
at $1600 per week, intensive care fees of $2200 per day, and regular
hospital bed fees of $1100 per day (note that the airfares were donated,
so their cost was unseen). Despite the expense, Dean remains convinced
that performing future operations in Australian was not feasible.

In closing, Dean said that their overwhelming feeling was that they were
completely unprepared for the ordeal. He hoped that by sharing their
experience, those who follow will be better prepared.


Andrew Berry



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