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Surgery Story - Cameron Mark Rondi

 

Cameron 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.   

Cameron 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.   

He told 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 this? 

We were 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 Synostosis.   

We then 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. 

Dr Kelly 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. 

A surgery date was set for the 25th July as they felt the need was not urgent as there was no sign of inter cranial pressure.     

On 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.   

We called 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. 

Blood Donors needed to be arranged as his Blood Group is not common he is B +. 

Cameron 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. 

Cameron was prepped for surgery and was in theatre for 7.5 hours, he had blood transfusions etc.   

Waiting 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.   

He had 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. 

We were 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. 

On 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. 

On 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. 

We were in high care for a day and were then admitted into the general ward 

We were 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” 

This was 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. 

Within 3 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. 

Cameron had his Blessing 4 weeks after his op and he is doing so well, there have been no side effects. 

Cammie is 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 travel. 

I hope 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 family through.

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Surgery stories
    

Cameron Rondi
Cameron 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 ...

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Chris-Lee - Our Miracle Child
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Claire Badden

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For more information or support, please contact Robyn Rondi on - robyn.rondi@hotmail.com  or  082 601 8585