Julia was born exactly
14 days after my calculated due date. I had enjoyed a pregnancy without
any complications and gave birth to a 48 cm girl with a birthweight of
3570 g. During labour I sensed that something was wrong. The doctors explained
to me later that my daughter had been born with a birth defect called
spina bifida, meaning she had an open wound on her back. In order to treat
the wound Julia had to be transferred to the university hospital in the
city of Rostock, where she spent the first few weeks of her life. She
was suffering from excess pressure to her brain and needed a valvular
shunt. We were able to take her home for the first time when she was three
months old. |
From our very first visits to the hospital we were being informed about
possible physiotherapy exercises that could help Julia. These have indeed
become part of our daily routine. Nevertheless Julia had to undergo some
corrective surgery to her feet. The orthopaedic ward of the university
hospital straightened her feet in several operations. Julia had to spend
much of her first year in hospital and her bladder and kidneys had to
be monitored regularly. At the beginning infections were treated instantly
with drugs, but another shunt soon become necessary.
|
Despite these circumstances Julia grew up to become a very cheerful girl.
The daily exercises soon made it possible for her to sit up straight with
a little bit of assistance. By the age of two she even managed to control
her bladder at night. Predictions that she would remain incontinent were
confuted.
When Julia reached crèche age she was supplied with orthoses.
The first ones reached up to her hip and were rigid. With the help of
a rollator she managed to make her first steps. When she was four years
old she joined an integrative playschool in the town of Güstrow.
Before starting school she had to undergo repeated control check-ups.
Apart from the usual childhood diseases Julia grew up as "healthy"
as any other child.
|
She celebrated her first day at school at our normal local elementary
school. With the help of a first wheelchair and wonderful support from
her family and the staff at her school she finished elementary school
successfully. Over time she became more and more reliant on splints, until,
at the age of 9, a hip operation became inevitable. The surgery was carried
out at the university hospital in Rostock. Julia recovered quickly, but
as a result her left leg is now around 3cm shorter than her right leg.
Afterwards new orthoses had to be fitted, but the hips didn’t need
any further support. Her wheelchair and a lift in the school building
allowed her to eventually gain a secondary school certificate.
A medical adviser from IMF Reha GmbH, Gera, who had introduced himself
during a consultation hour in 2003, told me about IMF®-Therapy. First
tests were positive and Julia was considered a suitable patient. Julia
has been exercising daily at her home ever since, under the guidance of
various therapists. We were reasonable happy to see initial results. The
general stability of her torso improved considerably.
|
In November 2004 Julia was taken by surprise by a shunt failure that
was diagnosed late. After several misdiagnoses Julia was fitted with a
new shunt system. At the same time she developed stiffness in the neck
and plegia in both hands. The stiff neck improved rapidly but Julia needed
specialised mental treatment to retrieve movement patterns regarding her
arms and hands. After a few months this therapy resulted in a success
and Julia was able to coordinate her hand movements again.
Meanwhile her walking has improved so much that when at home she doesn’t
need the peronäus-splints anymore. The insights we gained in the
last 12 months illustrate clearly what a great potential spina bifida
patients have. We should make the most of this potential in therapeutic
treatment.
Signed Christiane F.
(Mother) |
