the short story
- Born
27th January 2008, at 34 weeks (6 weeks premature) at St Vincents Private
Hospital, Melbourne
- Birth
Weight 1.90kg
- Transferred
36 hours later to Neonatal Intensive Care Unit - Royal Childrens
Hospital, his problems
are not related to his premature birth
- Discharged
from RCH on 16th June 2008 - yep that's 4.5 months in hospital
- No
diagnosis as such, has been simply put in the "developmental delay"
category
- It
is expected that Joshua may be quite severely disabled, that is, he may not
walk, talk or be able to look after himself, his hearing and sight are quite
compromised and there may be some mental retardation.
the detailed story
Joshua's Condition -
Hypotonia - (Low
muscle tone) - This was first diagnosed as we arrived at RCH NICU - "floppy
baby" It not only affects the way he moves his arms and legs (ie very weakly), but
affects his throat such that he cannot suck or swallow nor can he protect his
airway. That
is, he is liable to breathe anything in his mouth into
his lungs including his own saliva. This breathing of fluid into the
lungs is
called an aspiration and means part of the lung will not work ie
pneumonia
which of course there is not much you can do about and becomes very
dangerous
for babies. In order to ensure this does not happen, we have to
mechanically suck out his
saliva quite regularly (at least every 1-2 hours. More if he is awake,
active
or upset) as he can not swallow it and will choke on it if it is not
removed. This lack of suck or swallow also why he is fed via a tube
inserted into his
stomach, called a PEG. The top of his stomach has been tightened up
(Fundoplication) so that he cannot burp or vomit, as again this would
end up in
his lungs and be potentially very dangerous. It is not expected that
Joshua will be able to swallow or
gain good enough control of his airways such that the PEG will ever not
be
required, but we of course remain hopeful and are working with his
speech
pathologist to step-by-step move towards getting him to accept things
in his
mouth and then perhaps towards swallowing.
Joshua at 7 months has limited movement, his head control is
getting better, as is his rolling. We will work towards sitting unsupported,
but at the moment he sits in a special little chair called a TumbleForm which
helps support his head and body, and he plays with his sparkly beads either
hanging on a frame or a special table in front of him. We are working with some
wonderful Physiotherapists and OTs to encourage as much strength and movement
as we can to ensure he reaches his best potential.
We don't have any smiles at the moment, but I am sure they
are only just around the corner, and you can be rest assured that the moment we
get one that his dad will be there with the camera and you will not be able to
escape the numerous photos.
Vision impairment - Joshua cannot see
as well as he should at this age, it is believed that he may have Cortical
Visual Impairment.
Vision Australia
has a fact sheet you can look up for more information (click here to view link)
CVI seems to come with the "disabled" territory, and cannot
be corrected with glasses.
That is, it is not so much the case that everything Joshua
sees is blurry, it is that his brain cannot process what he sees, therefore
most of the time he is not looking at things, his eyes just seem to aimlessly
wander upwards usually towards the light. Sometimes he can "fix and follow" on
objects moved slowly in front of him, we are hoping these episodes will become
more rather than less. Vision Australia currently see Joshua every couple of months and are
wonderfully supportive and inspirational in getting him to explore his surroundings
and working out the things he can see best.
At the moment, he can only see strong contrast (black and white or
strong
contrast colours like red), and is attracted to things that sparkle,
thus he
has lots of sparkly beads that he loves to play with, we are a little
worried
he might end up as the next Peter Allen and start shaking maracas and
singing "I go to Rio", but would love it if he did anything close.
Hearing impairment - because Joshua cannot swallow his secretions, they pool in his sinuses and
tubes in his head, fillng his eustachion tubes and impairing his hearing. In
other words, his ears are blocked all the time, his eardrums don't move and
therefore he can't hear much at all. This may improve as he gets older, as he will hopefully be
upright more, his tubes will become more angled allowing the secretions to
drain more easily and grommets can be inserted to assist with this. Joshua has a 90db loss in one ear (profoundly deaf) and 45db
loss in the other (bit deaf) and therefore has been fitted with a little
hearing aid which he wears in a head band, so he looks a little like a bald
tennis player of the 1980's. We thought we really noticed the difference with his
responses, and the way he seemed to follow a whole lot quicker, but have been proven
consistently wrong by the numerous hearing tests he performs so badly in (no
responses to any noises, not even the HUGE drum they wheeled into the room and
bashed loudly less than 20cm from his ear..) He is currently seeing Australian Hearing every few months
to monitor his hearing needs and thoroughly embarrass his parents with his lack
of interest and response in the hearing tests. Each time they ask us how we think he is going - and being
typically hopeful and over compensating parents we tell them all the things we
think are evidence that he hears. Then he refuses to even blink at the monster
drum. I am sure Aust Hearing thinks we are idiots.
HISTORY
the Birth
Baby
Rigby was due to arrive on March 13th - Labour Day
Weekend (yes God has a sense of humour). However typical of his
heritage, he wasn't going to hang
around in the very cramped waiting room that long and decided to take
advantage
of the earlier long weekend and arrive on the Australia Day Weekend
instead. Unfortunately this was also his obstetrician's birthday, and
a Sunday, thus he was brought into the world by a stranger wielding a
pair of
scissors. Baby Rigby did give his parents some warning, he made some
noises the week before and let everyone know he was on his way, and no
amount
of drugs was going to stop him ultimately making his arrival sooner
rather than
later. Mind you, Mum and Dad weren't going to miss out on the
Police Concert the Saturday night before his birth, he had a good dance to all
his Mum's old favourites. He then got to stay up once they came home in the
early hours of the morning to bottle the inaugural cheeky chilly chutney and
kasoundi his father had been cooking, before really making his journey towards
the light at 7.00am on Sunday. After more than a few hours Baby Rigby was born at 4.35pm,
without any drama, except for the final few minutes where his paediatrician
threatened to not hang around as he had an emergency caesarean to perform. Thus
it was decided that this baby would need to get a hurry on or wait an hour,
when the word forceps was used, Mum made a special effort to push him out
quicker than anyone thought possible. At birth Baby Rigby was a little strange looking, with his
ankles around his ears - but this was exactly how he had been in every ultrasound.
Everyone kept on assuming he was a breach delivery, but it was just the way he
decided he liked to be. We were told this would right itself in a few days, and
this was exactly the case. Immediately after birth it was off to an Isolette (humidicrib)
in the Special Care Nursery where we were told he would possibly have to remain
for up to 6 weeks. The best photos taken of him were taken just after he was
placed in the Isolette, less than a few hours old. He was put on a drip, and oxygen but his oxygen saturation
levels kept dropping which was confounding the nursing staff. Finally after 36
hours the magnificent Dr. Carolane spoke to us about "giving a friend of his a
call at the Childrens" within hours it had been arranged for him to be
transferred there "for a few days to sort out his breathing".
at RCH - Neonates
Once at the Neonatal Intensive Care Unit, it became obvious
within minutes as the specialists circled around us, that Joshua did not just
have a few breathing problems and that they thought his problems were quite
serious. The rest is a blur. Consultant teams came and went on a daily basis, sometimes
with conflicting opinions, which we always valued, as to us, this was a sign
that we really did have some of the best, broad thinking, specialist doctors to
be found anywhere in the world. Their communication with us was superb, there was the
opportunity twice everyday to meet with all the nurses and doctors and ask
questions, seek advice etc. Joshua
was tested for every condition vaguely considered
relevant, from Muscular Dystophy & Myotonic Dystrophy to rare
genetic and
metabolic disorders, none of which have come up positive so far - which
we
think is great news as most of these conditions are degenerative. (That
is he
would slowly get worse and worse and would not be expected to live
long.) We do not believe his condition is degenerative as he hasn't
got worse, he has managed to develop, albeit very slowly, there is
progress
forward rather than degeneration.
More Joshua Stories coming soon!
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