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FROM
START TO…
On 19 December 2004 our son Stan de Grauw was born
at 04.10 a.m. in St. Antonius Hospital in Nieuwegein.
Delivery was quick and relatively easy. Stan had a
very bad start nevertheless. A combination of
rapidly dropping heart tones during labor and his
lack of reserves resulted in his needing twenty
minutes of reanimation, which means he was without
oxygen for quite some time.
In critical condition and by emergency transport, he
was quickly brought to Wilhelmina Children’s
Hospital (WKZ) in Utrecht. There too, doctors feared
the worst. Partly at the doctors’ advice everyone,
including the family, said their goodbyes and
prepared for Stan to die. There was barely any brain
activity left, but because miracle children do exist,
it was decided to give him a chance. He was to be
attached to a respiratory system for at least
twenty-four hours and kept fast asleep through the
use of medication. They were fighting for his life.
To cut a long and very emotional story short:…..miracles
do exist! Stan’s brain activity returned all of a
sudden and his condition stabilized more and more.
Stan made sudden, relatively speaking that is, leaps
of recovery. He has, however, sustained damage to
the brain, namely in that part of the brain which
regulates motoric functions.
During the first months of his life it became clear
that Stan held a lot of tension and restlessness in
his little body. Because of this tension and
restlessness Stan cried a lot and couldn’t fall
asleep on his own. Stan was about six weeks old when
we first started swaddling him. The first two weeks
it took some getting used to, but eventually he
accepted the swaddling blankets and Stan was much
easier, as were we. We noticed that, as several
months progressed, Stan went through a positive
change. From six months on Stan was able to fall
asleep without the use of swaddling blankets. At Dr.
De Vries’ recommendation, at WKZ hospital, we sought
help from a practice for physiotherapy aimed
especially at children like Stan. Starting February
2005, Stan has undergone physiotherapy twice a week
by Gert Bouman (children’s physiotherapy). This has
now been reduced to once a week. We also receive
weekly therapy sessions during which we perform
exercises in a swimming pool. We must say we’ve
received a lot of help, support and advice from our
physiotherapist and that this has been of great
value to us. Stan has recently turned 13 months and
we are beginning to see the effects of the damage to
his brain. Stan still can’t crawl and won’t be able
to any time soon. He generally holds a lot of
tension in his body and has problems controlling his
muscles. In other words: his brain sometimes can’t
control his motions properly. The question is
whether Stan will ever be able to walk, be it
independently or with help. If he indeed ever
succeeds in doing so, it will most definitely take a
long time and a lot of effort.
Hopefully, Stan will soon undergo treatment that is
called Hyperbaric Oxygen
Therapy.
This type of therapy can consist of five sessions of
forty treatments (in other words: five times forty
days.) This amounts to two hundred treatments, which
will then also be accompanied by daily physiotherapy
sessions. The younger the patient is when therapy
begins, the greater the chances of improvement in
the afflicted area of the brain. For Stan, who is
now 13 months old, the timing is perfect. There is a
real chance that a portion, or more, of the damaged
brain cells could recover. However, Hyperbaric
Oxygen Therapy alone costs €30,000- and health care
companies will not pay for this treatment. We will
have to pay for all of it. Apart form the costs
mentioned, there will also be travel- and
accommodation expenses, and costs for adjustments to
be made.
Of course, we, as Stan’s parents, want to do
everything possible to help Stan. However, we are
limited in our means and that is why we are asking
for your help and support.
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