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What is Craniosynostosis?

Types of Craniosynostosis

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Associated Syndromes

Positional Plagiocephaly

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Surgery Stories

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Questions to ask the doctor

 
  • How many Cranio Surgeries have they performed?
  • What was the success rate?
  • Can references be provided with contact details of past patients?
  • What is the preferred age for surgery?
  • What will the approximate length of surgery be?
  • Will the child need more than one operation?
  • What will happen in the surgery, please provide details – this is so you have a better understanding of the procedure
  • What is the expected recovery time post surgery?
  • What will the length of the hospital stay be, inclusive of ICU?
  • What will be used on your child’s head - staples or absorbable stitches?
  • How many units of blood will be needed for the blood transfusion and will it be Adults Units?
  • What type of incision will be made? (straight/zig-zag)
  • Will they shave the childs head or not?
  • What will the frequency of follow-up visits be?
  • Does the doctor recommend that you go for genetic testing?
  • What will the potential deformities, problems or areas of concern be should you elect to not go through with the surgery?
  • What other specialists does the doctor recommend that you consultant with (Ophthalmologists, Pediatric Neurologist etc.)
  • When is surgery set for?
  • Will you be allowed to stay with the baby at the hospital, will you have access to your child 24 hours per day?
  • Are you allowed to gain private donors for the blood donation and what is the risk thereof?
  • How long can my baby not eat or drink for prior to surgery?
  • How soon after surgery will I be able to see my baby?
  • What consent forms do I need to sign for surgery and the hospital stay?
  • Are they available to read in advance?
  • If I am breastfeeding, will the hospital have a breast pump available?
  • Does the hospital have any policies regarding nursing while in ICU?
  • What do I need to watch out for following the surgery? Any special precautions that I need to take?
  • What should I bring to the hospital for my baby?
 
 
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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Blake Campbell
Blakes surgery day was 4 April 2006...

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Azia-lynn
(not so) little Azia-lynn is born 1 week early (on her original due date!) 8lb 15oz and 21 inches...

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Tiaan Heyns
Tiaan was diagnosed with Sagittal Synostosis at six weeks of age.

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Chris-Lee - Our Miracle Child
In January 2007 after several tests and treatment – I was told that I will not be able to have children. 

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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