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Our
daughter was born ten weeks premature, on 7 November 2005 . She was a
tiny 1199 gm, but very beautiful and perfectly formed. We named her Zoe
– Greek for life.
Zoe should have
been born in January.  The doctors never could tell us why it had all
happened so much sooner than expected. It seems she was in a hurry.
Zoe had a tough
start to life. Her first 89 days were in hospital, at least 60 of those
in an enclosed humidicrib, with tubes up her little nose to help her
breathe. Most of the touch she received was procedural – changing
of tubes, needles, blood transfusions, physiotherapy...
 We did not get
to cuddle our baby girl until she was 10 days old, and Zoe didn’t
get to breastfeed until she was about two months old. I remember her
first feed on day three – it was a big event as the nurse let me
hold the tube that “poured” milk down to her stomach
– all of one ml.
Zoe eventually
came home and seemed to be doing fine. I only started to suspect that
something was not quite right when she was about six months old
(chronological age) as she did not seem interested in the toys around
her, and was happy to lie on her back quietly for long periods of time.
She was also not making much attempt to roll... not even on her side.
No one around
seemed overly concerned as they factored in Zoe’s prematurity.
And if there was anything anyone else suspected, no one told us. So it
was a shock when one day in October, the Paediatrician at Nambour
Hospital mentioned the words cerebral palsy.
Mitch and I
walked out of the hospital in a daze. No doubt many parents who heard
similar news for the first time felt the same emotions we did –
disbelief, shock, sense of injustice, anger, fear, grief, sadness,
hope, despair…
We began
reading and researching on the Web on what we were up against and how
best to help Zoe. We realised that cerebral palsy was just a vague
label for brain injury that sometimes happens with premature births. We
also learnt that every brain injury is unique and no one can predict
how successfully Zoe will respond to the right treatment. According to
one specialist the best label for Zoe's condition is "Zoe's brain
injury." Anything else just confuses the issue.
We are
determined to do everything we can to enable Zoe to learn to crawl,
walk and eventually even run like a normal child. We want her to have a
chance at a normal life.
Early intervention
We contacted
many therapists (traditional & alternative), sought a second
opinion with a developmental paediatrician in Brisbane (who also
thought it was cerebral palsy), and sifted through heaps of information
(some of it contradictive) to find the most potentially effective
therapies for Zoe. While we found quite a number of different
treatments and therapies, we quickly realised that we needed to
prioritise so as to not overwhelm Zoe, and ourselves.
We are currently working trying out several different therapies. See the therapies link for more details.
From what we
have read and what the experts tell us, early intervention gives the
brain a better chance to learn to "rewire" itself, and brain-injured
children have the best chance of recovery if they receive consistent
and frequent therapy, daily.
We have been doing this since we received the initial diagnosis and have seen a lot of progress (see Updates on Zoe).
Thank you so much for being part of Zoe's and our community!
Zoe, Cynthia and Mitch
PS. News as of July 2008: After 20 months of uncertainty as to why Zoe's development is delayed, we found out that Zoe has a chromosomal disorder. |
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