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Great Ormond Street Hospital for Children

Great Ormond Street Hospital Craniofacial Unit

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The Craniofacial Unit at Great Ormond Street Hospital (GOSH) is one of four supra-regional funded centres in England.

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The Department of Health, recognising the importance of concentrating the care of patients with rare conditions requiring extensive multidisciplinary care into specialised centres, has provided all four units with supra-regional funding through the National Specialist Commissioning Advisory Group (NSCAG) since 1987.

The other centres are at Alder Hey Hospital in Liverpool, Diana Princess of Wales Children’s Hospital in Birmingham, and the John Radcliffe Hospital in Oxford.

Craniofacial Unit

We are a large multidisciplinary team, consisting of plastic surgeons, neurosurgeons, neurologists, dentists, ENT colleagues, ophthalmologists, audiologists, genetics colleagues, speech & language therapists, psychologists, as well as two clinical nurse specialists supporting the children and their families.

We see children from newborn through to 18 years old and link in with the adolescent service at University College Hospital (UCH), which includes maxillofacial surgery.

We treat an average of 250 new patients a year and undertake 200 surgical procedures on children with congenital and acquired craniofacial conditions. About 10 per cent of the surgery is complex midfacial surgery including fronto-facial distraction.

Our philosophy of care for the child with a craniofacial condition is to provide a seamless and comprehensive multidisciplinary service that addresses both the equally important functional and psychological aspects of the conditions we see.

We aim to streamline our service to ensure the child and family receive care and treatment that is seen to be current best practice and ensures that problems are addressed early to facilitate the best outcome functionally, cognitively and psychologically that we can.

Weekly structure of the Craniofacial Unit

  • Monday – Theatre (all day theatre operation list for craniofacial surgery)
  • Tuesday – Discussions (consultants discuss recent scan results/operation plans/investigations)
  • Wednesday – Theatre (all day theatre operation list for craniofacial surgery) 
  • Thursday – Clinics (afternoon outpatient clinics held by craniofacial consultants/CNS’s/fellows)

Getting in touch

Sue Mcworth craniofacial secretary and assessment co-ordinator 0207 829 8658

Maria Casedas/Susan Pyke part-time  craniofacial secretaries 0207 813 8444

Call the secretaries if you have questions about practical issues around an outpatient clinic appointment, such as transport and interpreters. They can re-send appointment letters and information if you have not received it. They cannot answer clinical queries about your child’s health or their planned operation or procedure. 

 

You can also contact the appointments line for appointment queries on 020 7829 8880.

 

Hitesh Madhani Admissions co-ordinator 0207 405 9200 ext 0190

Call the admissions co-ordinator if you have questions about the practical issues around an admission, such as to change the surgery date, transport, accommodation or interpreters. They can re-send admission letters and information if you have not received it. They cannot answer clinical queries about your child’s health or their planned operation or procedure

 

Andrea White/Kathy Truscott Craniofacial Clinical Nurse Specialists 07768526449

E-mail: andrea.white@gosh.nhs.uk/kathy.truscott@gosh.nhs.uk

Call the clinical nurse specialists if you have any questions about the operation, care afterwards and equipment, for example, wound care, dressing changes or fixator adjustment or checks

Conditions Treated

Conditions we treat: (those highlighted in blue link to the information leaflets we have recently written on the GOSH website)

The skull is made up of several ‘plates’ of bone which, when we are born, are not tightly joined together. The seams where the plates join are called ‘sutures’. As we grow older, the sutures gradually fuse (stick) together, usually after all head growth has finished. When a child has craniosynostosis, the sutures fuse before birth. It can affect one suture or several.

When only one suture is affected, it is called simple or single suture craniosynostosis but when more than one suture is affected, it is called ‘complex craniosynostosis’. This may happen as part of a syndrome (collection of symptoms often seen together), and so may be referred to as ‘syndromic’ as well.

Craniofacial conditions treated by the Craniofacial Unit at GOSH

Members of the multidisciplinary team have developed the following information sheets for families explaining more about the causes, symptoms and treatment of specific craniofacial conditions. 

Simple or single suture craniosynostosis

Complex or syndromic craniosynostosis

Other craniofacial conditions

Information sheets about treatment options available at GOSH

Members of the multidisciplinary team have developed the following information sheets for families explaining more about the surgery to treat specific craniofacial conditions and care at GOSH throughout childhood and adolescence.

Maintaining Quality of Care

Quality of care is of utmost importance to us here in the unit at Great Ormond Street. In line with the hospital’s philosophy on quality and how to improve it, we want the care of our children to be safe, effective, patient centred, timely, efficient and equitable.

We can do this by undertaking joint working with the other craniofacial units in the UK to ensure joined up practice that is safe and evidence based.

We have protocols devised to ensure safety and quality, such as our fronto-facial protocol,and  post-operative fluid management.

We undertake initiatives for research and innovation and have a large research programme underway in 3D photography and surveillance to help us improve the outcomes for all our children following surgery.

We liaise and work with support groups for children with craniofacial conditions, such as Headlines and Changing Faces providing links for children, young people and their families.

Regular audit is undertaken to ensure that we maintain standards and change our practice accordingly.  Some of these audits are with children, young people and their families, looking at our service and how best we can provide them with what they need for ongoing treatment and support.

 

We offer an open and friendly approach to our care, offering a partnership with the families in the ongoing treatment and care of their child.

Research and Publications

The Craniofacial Unit is involved with a number of research and audit projects.

Ongoing and recent projects include:

  • speech, language and cognitive development in Aperts and Pfeiffers syndrome and sagittal synostosis
  • visual outcomes in craniofacial dysostoses
  • growth of osteoblasts on bio-absorbable membranes
  • investigation into factors affecting complication rates in frontofacial distraction
  • a visual analogue scale to assess outcomes in frontal remodelling
  • changes in speech following craniofacial distraction
  • relapse following frontofacial distraction
  • the role of surgery in the management of periorbital haemangiomas.
  • cognitive outcomes in children with craniofacial dysostosis
  • incidence of raised intracranial pressure in children with syndromic craniosynostosis
  • the use of “springs” in posterior vault remodelling

Research in collaboration with other craniofacial centres:

  • investigation into intraoperative blood loss during craniofacial surgery
    outcomes following frontal remodelling
  • the use of bioabsorbable membranes as frameworks for the growth of osteoblasts. (Collaborative project with Helsinki craniofacial group)
  • the incidence of raised intracranial pressure in complex craniosynostosis

Publications

Greig AV, Britto JA, Abela C, Witherow H, Richards R, Evans RD, Jeelani NU,
Hayward RD, Dunaway DJ. Correcting the typical Apert face: combining bipartition with monobloc distraction. Plast Reconstr Surg. 2013 Feb;131(2):219e-230e. doi: 10.1097/PRS.0b013e3182778882. PubMed PMID: 23358017. 

Dunaway DJ, Britto JA, Abela C, Evans RD, Jeelani NU. Complications offrontofacial advancement. Childs Nerv Syst. 2012Sep;28(9):1571-6. doi: 10.1007/s00381-012-1804-y. Epub 2012 Aug 8. Review. PubMed PMID: 22872275.

Britto JA, Gwanmesia I, Leshem D. The Christmas tree foreheadplasty: a noveltechnique used in combination with a bandeau for fronto-orbital remodelling incraniosynostosis. Childs Nerv Syst. 2012 Sep;28(9):1375-80. doi: 10.1007/s00381-012-1806-9. Epub 2012 Aug 8. PubMed PMID: 22872251.

Cobb AR, Green B, Gill D, Ayliffe P, Lloyd TW, Bulstrode N, Dunaway DJ. Thesurgical management of Treacher Collins syndrome. Br J Oral Maxillofac Surg. 2014 Sep;52(7):581-589. doi: 10.1016/j.bjoms.2014.02.007. Epub 2014 Apr 26. Review. PubMed PMID: 24776174.

Crombag GA, Verdoorn MH, Nikkhah D, Ponniah AJ, Ruff C, Dunaway D. Assessingthe corrective effects of facial bipartition distraction in Apert syndrome using geometric morphometrics. J Plast Reconstr Aesthet Surg. 2014Jun;67(6):e151-61. doi: 10.1016/j.bjps.2014.02.019. Epub 2014 Mar 12. PubMed PMID: 24709088.

Tatla T, East C, Marucci DD, Al-Reefy H, Madani G, Oakley R, Dunaway DJ. Frontoethmoidal Mucocele Following Pediatric Craniofacial Surgery. J CraniofacSurg. 2014 Feb 13. [Epub ahead of print] PubMed PMID: 24481162.

Cobb AR, Jeelani NO, Ayliffe PR. Orbital fractures in children. Br J OralMaxillofac Surg. 2013 Jan;51(1):41-6. doi: 10.1016/j.bjoms.2012.03.006. Epub 2012 Apr 10. PubMed PMID: 22497691.

Fitzgerald O’Connor EJ, Marucci DD, Jeelani NO, Witherow H, Richards R, Dunaway DJ, Hayward RD. Ocular advancement in monobloc distraction. PlastReconstr Surg. 2009 May;123(5):1570-7. doi: 10.1097/PRS.0b013e3181a07625. PubMed PMID: 19407630.

Jeelani NU, Khan MA, Fitzgerald O’Connor EJ, Dunaway D, Hayward R. Frontofacial monobloc distraction using the StealthStation intraoperativenavigation system: the ability to see where you are cutting. J Craniofac Surg.2009 May;20(3):892-4. doi: 10.1097/SCS.0b013e3181a14d70. PubMed PMID: 19369889.

The multidisciplinary team

We are a large multidisciplinary team, consisting of plastic surgeons, neurosurgeons, neurologists, dentists, ENT colleagues, ophthalmologists, audiologists, genetics colleagues, speech & language therapists, psychologists, as well as two clinical nurse specialists supporting the children and their families.

Further details of the team can be found below.

The Multidisciplinary Team

David Dunaway
Mr David Dunaway
Jonathan Britto
Mr Jonathan Britto
Mr Owase Jeelani
Mr Owase Jeelani
Mr Greg James
Mr Greg James

Mr Robert Evans BSc BDS MScD FRSFRCS
Consultant Orthodontist
Special interests: Specialist Orthodontic preparation for major midface surgery and post-op tooth realignment

Dr Lucinda Carr
Consultant Neurologist
Special interest: Neuro-development in syndromic craniosynostosis

Dr Ewa Raglan
Consultant Audiologist
Special interest: Craniofacial hearing difficulties

Dr Louise Wilson
Dr Louise Wilson

Miss Michelle Wyatt
Consultant ENT surgeon
Special interest: Airway management in syndromic craniosynostosis

Kemmy Schweibert
Kemmy Schweibert
Natasha Rooney
Natasha Rooney
Andrea White
Andrea White
Kathy Truscott
Kathy Truscott

Caroleen Shipster
Senior Speech and Language therapist
Special interests: Cognitive development in syndromic and non-syndromic craniosynostosis and speech difficulties in craniosynostosis related to function and cognition

Nivrithi Behari
Speech, Language and Feeding therapist
Special interests Feeding difficulties in syndromic craniosynostosis