Mark Rondi was born on the 10th of March at
Olivedale Hospital. When he was born he was diagnosed
with Craniosynosis, it was picked up at birth as he was
born with facial distortion, his skull had tried to
compensate to allow for the brain to grow, so had pulled
back and down and an extra piece of skull had formed on
his right hand side of his head. He was admitted to ICU
as due to the severity of the distortion, he battled to
suck and feed. His had no bone above his right eye, his
ears were out of line and the back of his head was
flattened. He had this protruding extra skull behind
his right ear. The Pediatrician then told us that he
was not sure what the problem was and that he would send
specialists to consultant with us.
went into ICU and was there for 2 days. He had CT Scans
and Brain sonar’s, just to add to this, the little mite
had a blocked bowel and had kidney scans and stomach
scans done as well, finally he had an enema and his
bowel cleared. He had to learn how to suck, which he
did and did very well. We saw a variety of specialists
who kept telling us they were not sure what was wrong
with him and Dr’s names were being flung around.
Eventually a Neurosurgeon was referred to us and we
were then told that Cameron has multiple suture
Synostosis of the Coronal and Lamdoid. We did not know
where to begin or what this was that we had to face, all
we could see was the bad distortion of his face and we
were trying to deal with the reality of facing the
situation. The Neurosurgeon told us that it is normally
genetic and he wanted to know if my daughter had this as
well – of which she does not.
us he would have to operate within the 1st
month. We obviously were hysterical on hearing they
would have to operate and cut my son’s head open to open
sutures to allow for his brain to grow. All of this was
extremely overwhelming and hard to deal with, my husband
battled to cope as well as he could not understand how
this little one could start his life with being faced
with such an ordeal – it was just not fair. I kept
asking myself, what did I do, how could I have prevented
discharged from hospital and the following weeks and
months were very trying. I was on maternity leave and
spent day in and day out, either researching trying to
get a better understanding of Cranio or consulting with
specialists. First we were told he may have a syndrome,
so off to the Genetic Clinic we went. They consulted
with us for over 2 hours to finally be told, that he was
clear of a syndrome and that this was Isolated
met with Dr Martin Kelly after doing a lot of Research,
as Cammie was diagnosed with Multiple sutures synostosis
and Plagio. We were advised to see an Audiologist a
normally the child has hearing problems, and they
thought he did not respond well, his ears were tested
and he was clear – Thank God.
advised that Cameron would need surgery and that he was
not willing to do the surgery until the age of 3 months
as the risk of blood loss was high. He explained that
he worked with a team of Doctors and that he would like
us to meet with Dr Marus the Neurosurgeon.
date was set for the 25th July as they felt
the need was not urgent as there was no sign of inter
meeting with Dr Marus, he informed us that he also
thought that Cameron had Facial Palsy. 2 Months down
the line, Camerons head started tilting and rotated to
the one side badly. I tried to ignore it and tell
myself nothing was wrong. I started phoning around as
someone mentioned to me, that he may have low trunk
tone. I finally got hold of a Pediatric Physio Sandy
King who we consulted with, she thought it was
Torricelli’s, yet was concerned that it may have also
been caused by inter cranial pressure.
Dr Kelly and consulted with him again, he checked Cammie
out and suggested that we do another CT and MRI so we
could tell what was happening. His CT and MRI Scan were
booked in June. He reacted badly to the anesthetic and
stopped breathing but all was fine. On getting the
results, there were signs of pressure yet the one
ventricle was being squashed, which concerned them. We
were then referred to a Pediatric Neurologist at
Sunninghill. She was also concerned and suggested that
a Shunt be put in, yet the Neuro would not hear of it,
they were not sure if Cameron had brain damage so we
needed to get this checked, he was a little behind on
his Milestones, yet we will have to keep on consulting
with her until he is 4 or 5, she was happy at that stage
that surgery go ahead. She then confirmed that she
thought there was no definite sign of palsy anymore.
Donors needed to be arranged as his Blood Group is not
common he is B +.
went in for his Surgery on the 25th July
2008. It was extremely daunting and we had prayers
flooding in left right and centre, the support that our
family received was incredible.
was prepped for surgery and was in theatre for 7.5
hours, he had blood transfusions etc.
in the passage outside theatre for our little boy was
the worst thing we had to do, the unknown was
terrifying. He went straight into the Cardiac ICU
Unit. He was on a respirator as he had to be bagged a
number of times in the operation as he had had a bad
reaction to the pain medication that was administered.
He looked terrible, he was pale, slightly swollen, and
there was dry blood on him. As you can imagine looking
at your child, for a parent this was horrifying.
holes in his hands everywhere, 15 in the left and 9 in
the right, as they had battled to find his veins. They
had to perform a cut down to get to his main vein to get
him to breath. He had main lines in his neck and had
drains coming out of his head, yet it was all bandaged.
His eyes were slightly bruised and I was told they had
to stitch his eyes closed for the operation. Another
unit of blood had to be given in ICU due to the amount
of blood loss.
then told to expect the worst as the day to follow his
head would swell three times the size and bruising would
set in and his eyes would be swollen shut. They would
try on Friday night to take the respirator off. The
next morning we arrived in ICU expecting the worst, he
was still on the respirator and was still sedated, I was
devastated. On returning later that evening they had
removed the respirator yet he was screaming with pain.
They administered pain medication which seemed to work
immediately. When we left the hospital, we were both
very upset. Again we were told please expect the worst
as he has not swollen or bruised yet.
arriving at the hospital on Sunday morning, I was amazed
to see this precious angel sitting up smiling, his
drains had been removed and we were told he was to be
transferred to High Care. They removed his drips and
bandage and all he had was his dressing and his lines in
his neck still, where they administer pain medication.
He still had the monitors on his feet where the monitor
the oxygen sats and blood pressure.
arriving in high care, Cammie shocked the doctors and
nurses as they could not believe the recovery, they had
never seen this before. The Pediatrician even commented
that she has never seen a Cranio Baby recover so well.
I am convinced it was all the Prayer and to scare you a
little, he came out of surgery with a cross birthmark on
the back of his head, of which was not there before.
They removed his dressing.
in high care for a day and were then admitted into the
discharged on the Wednesday morning and my boy came home
with us. We were discharged with Panado syrup, of which
he did not even need. It was very hard on his sister as
she was not allowed to see him at all. When she saw him
for the first time, all she said was “they have given
Cammie a hair cut”
taken 2 weeks after surgery, all that we had to do was
apply Bactroban to the wound and allow the stitches to
fall out on their own. We could still bath him and wash
his head with mild soap as per normal.
weeks after surgery, all swelling had completely gone,
his entire facial appearance has changed and his hair
has started growing back, the cut had healed beautifully
and all that he has is a red scar line.
had his Blessing 4 weeks after his op and he is doing so
well, there have been no side effects.
a healthy happy boy, we will be going through this again
in a few months time, as he is due for surgery to
correct the Lamdoid, and his neck is still tilted to the
one side. Cammie is still having Physio to try and
correct this. The Plastic Surgeon referred us to an
Ophthalmologist to see if there is a problem with his
eyes that may be causing the squint. Results were
fruitless. So yes we carry on our journey of many
consultations with doctors and specialists. I am sure
we still have a long road ahead, which we will still
that Cammies story was able to give you a brief insight
as to the journey that our Cranio Babies face!! And
trust that should you have to experience this journey
you have the support and means available to pull your