What is Craniosynostosis?

Types of Craniosynostosis

Cranio FAQs

Associated Syndromes

Positional Plagiocephaly

Surgery Types

Operative Procedure

What to ask the doctor

Surgery Stories

Cranio Support / Doctors

Educating Others on Cranio


Thank You

Awareness Gallery




Operative Procedure


What to expect after surgery

  • After surgery, the child remains in an Intensive Care Unit for 1-3 days, depending on the surgery.
  • Swelling is most noticeable 2-3 days after surgery and takes several weeks to completely resolve.
  • In a patient with significant facial swelling, the breathing tube is left in place to protect the air passage. This remains until the swelling improves and the patient can breathe on his or her own.
  • The child will have drains in his head, this is removed prior to the child being transferred out of ICU.
  • The child normally enters high care for monitoring purposes and then is put into a general ward.
  • Once the dressing/bandages are removed, the scalp is able to be cleaned with a mild soap removing all crusts.
  • Dissolvable stitches are normally used, which do not require removal.
  • When the child is discharged, parents need to watch for any redness or drainage around the suture line, which may be a sign of infection.

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 happened in the surgeon, 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 at the baby at hospital and room in, 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 am 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?

Items to take to the hospital

Infant / Child

  • Favorite toy – bear in mind if the toy has sound, you are normally in an open ward
  • Front button vests or baby grows or t-shirts depending on the age of the child
  • The hospitals normally provide the bottles if a private hospital
  • Formula/food (provided by hospital)
  • Nappies and Toiletries are to be provided by yourself


  • Books/magazines
  • Pen/paper
  • Phone number list
  • Cell Phone
  • Camera
  • Toiletries
  • Brush/comb
  • Tissues for tearful moments
  • Comfortable clothes
  • Snack food/gum
  • Money for the coffee shops in the hospitals

Blood donation / Blood transfusions

Many families facing craniofacial surgery for their children are forced to deal with and face a decision with regard to the blood transfusion.

The South African National Blood Service as the facility whereby you are able to elect and go with an anonymous blood donor or you may request designated (Directed) blood donations to be made by family members or friendly that are a matching blood type for your child.

The South African Blood Bank follows safety procedures to ensure the safety of anonymous blood: blood donor eligibility standards, random screening and laboratory testing, confidential exclusion of donations, and donor record checks. Random checks are performed for infectious diseases.

  • Efforts are made to recruit safe and suitable volunteers.
  • Potential donors are asked a series of questions about their health and lifestyle, including direct questions about high-risk sexual behavior.
  • The blood is tested for the possibility of infectious diseases such as hepatitis, HIV, HTLV-I ( a virus associated with a rare form of leukemia), HTLV-II, and syphilis.
  • Potential donors are offered a confidential opportunity to exclude their blood.
  • Every donation is checked against existing records. If a potential donor was rejected in the past as indefinitely deferred, their blood will be withdrawn from circulation.

The Process to follow should you wish to have Designated (Directed) Blood Donation

  • Your Doctor will provide you with the contact details of the Blood Bank that is closest to you
  • Your doctor will need to acknowledge your request for a Designated (Directed) Blood Donation and both the Pediatric Ward and the Doctor would need to follow the Instruction of this from the South African National Blood Service, which would include the process to be followed for Ordering and Handling of the blood.
  • The Doctor will need to submit a letter stating how many units are required for surgery
  • A request will need to be done at a Laboratory testing the blood Group of the patient, proof of this is to be submitted to the Blood Bank
  • The direct donors will then need to request a Pathology report with a registered Laboratory: eg: Ampath or Lancet detailing their Blood Group
  • Proof and copy of this is to be given to the Blood Bank
  • An appointment is to then be made with the Blood Bank for the direct donors where a series of confidential questions are asked. (Normally 5-7 Days prior to surgery)
  • The Direct Donors will then donate the unit of blood
  • Testing will then be performed
  • The Blood Bank will submit a copy of the Barcodes that detail the Unit numbers of the direct donors, this needs to be put in the Patient file

Note: You will be required to sign an Indemnity stating that your doctor has explained the risks of donated blood and the possibility of transmission of infectious disease in the blood

The Process the hospital will follow

  • Ensure the patient record has been clearly marked that the patient has requested blood from a directed donor. – The doctor will ensure that the correct blood is administered
  • A blood sample will be taken from the patient of whom the hospital and doctors will co-ordinate this.
  • Available units of designated (directed) units will be cross matched and will be forwarded to the hospital by the blood bank

Preparing older siblings for their younger siblings surgery

  • Give explanations of the diagnosis and the operative procedure in words that your child will understand.
  • Explain to the sibling that the doctors and the operation will help their sibling get better.
  • Tell your child when the operative procedure is to take place and prepare them for the length of stay in the hospital.
  • Explain to their sibling that they will not be allowed into ICU as they may carry germs that would be bad for their sibling
  • Explain that when the sibling enters high care and the pediatric ward that should they be under the age of 12 they will not be allowed in due to the risk of infection
  • Encourage your child to talk about the operation and ask questions about the operation.
  • Observe how your child plays, as this is how he/she deals with thing that they do or do not understand.
  • Explain that their sibling will not be able to feel, hear, or see anything during the operation as the sibling will be given special sleep medicine to make them sleep through the operation
  • Do not make promises you may not be able to keep.
  • Ensure you advise them that the sibling will be coming home with a big cut on their head and that they need to be gentle as it is a big sore.
  • In the week of the Surgery while you and your spouse spend most of the time at the hospital, ensure the sibling is in the care of trusted family or friends where he/she will feel that they are receiving attention.
  • Give attention and alone time to he other sibling so they do not feel left out
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 ...



Blake Campbell
Blakes surgery day was 4 April 2006...



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



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


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. 


Claire Badden



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