Craniofacial services at Sydney Children's Hospital, Randwick

Contact details

Phone:(02) 9382 1544 

Fax: (02) 9382 1895

Location: Outpatients, Sydney Children's Hospital, Randwick

The Sydney Children's Hospital Craniofacial Unit is devoted to the care of complex abnormalities of the skull and face.

The craniofacial team at Sydney Children’s Hospital, Randwick, offers a complete range of specialist services for the comprehensive management of all craniofacial conditions.

Craniofacial differences are extremely complex. There is no single way to treat these conditions. Care plans are individualised to the patient and reflect the parents’ preferences and the surgeons’ experiences. The staff at The Sydney Children’s Hospital Craniofacial clinic are committed to creating individualised treatment plans focusing on each child’s unique needs.

Craniofacial conditions are classically present at birth and affect either the bones and/or soft tissues of the head and face. Some of these diagnoses are linked to complex genetic causes while others are isolated events in children with no other health issues. Craniofacial difference are the result of a range of conditions, and may present with: an abnormal head shape; a soft tissue lump; ear abnormalities; eye abnormalities or problems with the mouth and jaw.

In addition to our specialised multidisciplinary team, a critical part of our team includes you and your child. Our team ensures that adequate knowledge is provided to you about the comprehensive care plan and the timing of interventions. Some craniofacial needs may continue into young adulthood, our service ensures that we guide patients throughout all of their life stages to improve their overall functioning.

We work closely with Cleft Palate Clinic and Orthotics department (who run the Helmet Clinic) to coordinate care for patients with complex conditions.

Keep up to date with the latest information:

Craniosynostosis types

The top of a baby’s skull is made up of five bones that are joined together by fibrous joints called sutures. These flexible joints allow the skull to travel through the birth canal and then these sutures remain open while the baby’s brain continues to grow.

Craniosynostosis is a condition in which one or more of the fibrous joints (sutures) between the skull bones fuse too early. This results in an abnormal growth pattern of the skull and can lead to an abnormal shaped head.

Craniosynostosis most often occurs as an isolated abnormality in an otherwise healthy child. There are some complex forms of craniosynostosis that are associated with known syndromes.

Children with these syndromes have a number of additional differences and often require a more involved and ongoing care plan

Non-synodromic craniosynostosis

There are various types of isolated (non-synodromic) craniosynostosis, which are defined by which suture is involved.

Sagittal

Sagittal synostosis is the most common type of craniosynostosis. The sagittal suture runs from the front to the back along the middle of the skull. The early fusion of the sagittal suture results in condition referred to as scaphocephaly. The resultant head shape from the fusion of the sagittal suture is a long and narrow, rather than wide. The forehead appears pushed forward or protruding (frontal bossing), and the back can appear pointed or narrowed.

Metopic

The second most common fusion pattern occurs in the metopic suture. The metopic suture runs directly up the middle of the forehead, beginning at the nose and goes back to the anterior fontanelle. Premature fusion leads to a condition called trigonocephaly. The forehead becomes angled and is not smooth and flat. There may be a triangular shape to the head. Metopic craniosynostosis can cause secondary changes in the face and the eye sockets may appear close together.

Metopic synostosis can be either mild, moderate or severe. In many mild to moderate cases, the area flattens down as the child grows and no surgery is required. In more sever case, the child may need to undergo a surgical procedure to reshape the forehead and upper portions of the eye sockets. This procedure is known as a Bi-Frontal Orbital Advancement (BFOA).

Coronal

The coronal sutures run from one side of the skull to the other. Fusion of one of these sutures (unicoronal) may result in the forehead to flatten on the affected side, and to appear to bulge on the unaffected side. This condition can also lead to elevation of the eye socket on the involved side, nose deviation and a slanted skull. This condition is referred to as anterior plagiocephaly.

Uni-coronal synostosis is also treated with a procedure known as a Bi-Frontal Orbital Advancement (BFOA). If both sutures fuse (bicoronal), it results in a short, flat and wide appearance of the head, which can also be vertically elongated. This is condition is called brachycephaly.

Lamboid

The lambdoid suture runs across the skull at back of the head. Fusion of this suture may cause flattening of the head on the affected side, posterior positioning of the affected side, a protruding mastoid bone and tilting of the top of the head to one side.

Syndromal causes of craniosynostosis

Sometimes craniosynostosis is caused by genetic presentations, including:

  • Apert Syndrome
  • Crouzon Syndrome
  • Meunke Syndrome
  • Saethre-Chotzen Syndrome

Surgical treatments of craniosyntosis

There are many approaches to treating craniosynostosis. Different surgeons aand different hospitals may treat this complex problem in different ways. Around the world there is no single protocol, in terms of timing or technique, that has been shown to be superior to all others.

Specific treatment strategies for craniosynostosis are dependent on the age of the child at first presentation, the severity of the condition, parental preferences, and surgeons’ experience and preference.

In broad terms surgical treatments can be considered as either early less invasive approaches or later more extensive remodelling’s.

Early interventions

These include strip craniectomies and spring activated cranioplasties. Eary surgeries may be combined with the use of molding helmet post-operatively.

At Sydney Children's Hospital, Randwick, these procedures are usually performed between three and six months of age, at a time when the bone of the skull is the correct thickness and before the period when rapid head growth has finished.

Re-modelling surgeries such as total Cranial Vault Remodelling (CVR)

Later surgeries are often more extensive, involving an incision in the hairline extending from just above one ear to the other. The bone of the skull is removed and then replaced in a corrected position.

Due to the nature of this type of surgery it is often performed at a later age. At Sydney Children’s Hospital, Randwick we prefer to plan for this surgery between nine and 18 months of age.

Other reasons for abnormal head shape

Abnormalities in the shape of a baby’s head does not always mean that they have craniosynostosis.

Plagiocephaly can also occur as a result of abnormal forces on the skull during pregnancy or after birth. Before birth this can occur as the baby descends into the pelvis, if the mother has an unusually shaped uterus, if the baby is in an odd position in utero, or with multiple babies (twins or triplets).

After birth, plagiocephaly is usually the result of gravity, if a baby lies in one position for a long time.

Many of these will improve over time due to growth and development, or with frequent re-positioning of the baby. Conservative interventions such as molding helmets might be used to treat plagiocephaly if the shape is not improving with re-positioning techniques. Helmet therapy should be commenced at approximately six months of age.

Other conditions we treat

Other craniofacial conditions that we treat:

  • Treacher Collins Syndrome
  • Goldenhar Syndrome
  • Craniofacial Microsomia
  • Fronto-nasal dysplasia
  • Pierre Robin Sequence
  • VCSF/22Q deletion
  • Microtia
  • Mobius Syndrome

Referrals

Parents and carers

Please ask your GP or paediatrican for a referral who will then fax the referral to the SCH Craniofacial Clinic on your behalf. Alternatively, you can send your referral directly to the SCH Craniofacial Clinic on 9382 1895. 

Please ensure that the referral includes patient name, address and phone numbers so that we can contact parents/carers with an appointment. Unfortunately, appointments can't be made without a referral. 

GP or General Paediatricians

Please fax referrals to the SCH Craniofacial Clinic on 9382 1895. This referral will then be triaged. More information may (or may not) be requested if we feel this is required to help us determine the urgency of the child’s appointment. Once this appointment has been made, a detailed information letter will be mailed out to the parent/carer.

Like more information? 

Contact the Craniofacial Clinic on 9382 1544.             

Craniofacial clinic

Clinic is held on alternate Fridays in the Outpatients Department, Ground floor, Sydney Children’s Hospital, Randwick. Clinic commences at 7.30am.

Please arrive in plenty of time and bring your blue book with you along with any imaging for example x-rays or scans that your child may have had.

Children are evaluated in a supportive and playful environment by many different specialists – Plastic and reconstructive surgeons, Neurosurgeons, Oral and Maxillofacial Surgeons, Opthalmologists, Ear, Nose and Throat Surgeons, Medical Geneticists, Dentists, Orthodontists, Speech Pathologists, Anaesthetists, Social Workers and Medical Photographers.

Clinic usually finishes by 11am. However, Children attending this clinic often have complex needs, so please allow for additional time on the day of your appointment.

What to expect during your clinic appointment

Patients and their family are allocated a consultation room where they will stay for the majority of the appointment. The various specialty teams will move around from room to room to see each patient individually. Patients will have their height and weight taken by a nurse at the beginning of the session, and often their head circumference will also be measured by a doctor.

You can expect to be at this appointment for around 1-2 hours. After all patients have been seen in clinic, we hold our Multi-Disciplinary team meeting where patients' progress is discussed in depth and our specialists have input into your child's treatment plan. We need your consent to discuss your child at this meeting and will provide a form for you to sign.

Patients are asked to have their photograph taken by our professional medical photographer. Photographs remain a confidential part of the medical record, and are used to document changes in a patient’s condition over time.

If any medical imaging procedures are required, these will be organised by the team. For minor procedures such as X-rays or audiology (hearing) tests, you will be given forms and asked to go to the radiology department for the test at your convenience. If your child requires a more in depth procedure such as a CT or MRI under general anaesthetic (GA), this will be arranged and you will be informed by the Hospital of the date for the procedure.

Our team, including our dedicated Craniofacial Clinical Nurse Co-ordinator will be able to guide you throughout the entire process.

Meet the team

(A/Prof) Mark Gianoutsos, Associate Professor

Associate Professor (A/Prof) Mark Gianoutsos is one of Australia’s leading Plastic Surgeons. He graduated with Honours with a Bachelor of Medicine and Surgery from The University of Sydney. In 1996 A/Prof Gianoutsos was appointed Head of the Sydney Craniofacial Unit, where he continues to give service today.

He is also involved in the teaching and mentoring of many up and coming Plastic Surgeons, and is the Deputy Senior Examiner in Plastic Surgery for The Royal Australasian College of Surgeons as well as the Director of The Craniofacial and Plastic Surgery Research Unit at The University of New South Wales.

Dr Jeremy Hunt, Plastic and Reconstructive Surgeon

Dr Jeremy Hunt graduated from Sydney University in 1990 and entered surgical training, completing his Plastic Surgery training in Sydney in 2001.

After completing his training in Australia, Dr Hunt completed a further year of specialist training in the form of a Fellowship that focused specifically on paediatric craniofacial surgery techniques at the prestigious University of Texas, in Dallas Texas, USA - working alongside some of the world’s leading Plastic Surgeons. 

Dr Raj Reddy, Neurosurgeon

Dr Raj Reddy graduated from Sydney University in 1999 commenced neurosurgery training in 2005 and completed this in 2009, becoming a Fellow of the Royal Australian College of Surgeons. Raj had also undertaken a fellowship in paediatric neurosurgery at The Hospital for Sick Children in Toronto. one of the leading paediatric centres in the world.

He has a special interest in spine surgery, with foci on minimally invasive techniques as well as complex reconstructive surgery. The focus of his cranial surgery is in the management of intracranial tumours, trauma, and craniofacial operations; in both adults and paediatric patients.

Dr Tony Roscioli, Clinical Geneticist

A/Professor Tony Roscioli is a clinical geneticist at Sydney Children’s Hospital, consulting with both the Craniofacial and Cleft Palate multi-disciplinary teams; and group leader in Neurogenomics at NeuRA/Prince of Wales Clinical School, University of New South Wales. 

His clinical training has been in the fields of paediatric internal medicine and human genetics with an emphasis on dysmorphology. The basis of his research interests in gene identification has stemmed from his clinical training in the field of developmental anomalies/congenital malformations. 

Danielle Gardner, Clinical Nurse Consultant 

Danielle became the first Cleft and Craniofacial Clinical Nurse Consultant for Sydney Children's Hospital, Randwick in 2017.

Her nursing career began at St George Hospital in 1999, working in the areas of Orthopaedics, General Surgery, HDU and ICU. Danielle joined the Sydney Children’s Hospital in 2004 working in the Children’s Intensive Care Unit, regularly caring for children recovering from craniofacial surgeries for about 12 years. Danielle has post graduate qualifications in critical care nursing for both adults and paediatrics, she has nursed in the third world with the volunteer organisation Operation Open Heart, and is currently studying towards a Master’s degree in Public Health at UNSW.

Danielle is also a Justice of the Peace.

Keeley Cutts, Speech Pathologist 

Keeley completed her Speech Pathology training at the University of Manchester, UK in 2014. She has worked in two busy Speech Pathology teams in the North West of England after graduating with a first class degree and a distinction in her clinical practice. A large part of her role was working as a Cleft Palate and Craniofacial Link Therapist for the teams – liaising with hospital staff regarding assessment and treatment within the community.

Keeley is also currently completing her Master’s degree in Cleft Palate and Speech Disorders by distance learning at the University of Sheffield, UK.