Paediatric craniofacial · UK network
Craniofacial surgery for birth defects, in a designated centre with a full MDT.
Cleft, craniosynostosis and syndromic conditions are treated across two decades, not a single operation. This guide sets out the pathway, the timing, and the team that should be around your child at each stage.
Why families choose us
- 01
A paediatric craniofacial team, not a solo surgeon
Cleft and craniosynostosis need a full MDT — plastic surgeon, neurosurgeon, maxillofacial, ENT, orthodontics, speech, psychology and a clinical geneticist.
- 02
NHS designated centres, not opportunists
Craniofacial work is NHS supra-specialist commissioned to a small number of designated centres. Care in the wrong place is care in the wrong place, no matter what it costs.
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A pathway that runs from antenatal to adulthood
Cleft and syndromic craniosynostosis are not single operations — they are a plan across two decades, and someone has to hold the thread.
Key facts
What each craniofacial procedure involves.
Craniofacial surgery for birth defects is NHS supra-specialist commissioned — it is delivered at designated centres, not paid for at the front door. These are the operations and typical stays.
In short
Cleft lip at 3–6 months, palate at 6–12 months, and craniosynostosis vault work in the first year.
| Procedure | Funding | Typical duration | Hospital stay |
|---|---|---|---|
| Cleft lip repair (cheiloplasty, Millard) | NHS commissioned | 2–3 h under GA | 1–2 nights inpatient |
| Cleft palate repair (Furlow Z-plasty) | NHS commissioned | 2–3 h under GA | 1–3 nights inpatient |
| Alveolar bone graft (age 8–10) | NHS commissioned | 1.5–2 h under GA | 1–2 nights inpatient |
| Craniosynostosis — fronto-orbital advancement | NHS commissioned | 3–5 h under GA | 3–7 nights, PICU step-down |
| Monobloc / Le Fort III midface advancement | NHS commissioned | 5–8 h under GA | 5–10 nights, PICU |
| Mandibular distraction (Pierre Robin / syndromic) | NHS commissioned | 2–3 h under GA | 5–10 nights, distraction over 2–4 wks |
| Craniofacial MDT consultation (private review) | £300–£600 | 45–60 min | Same visit |
Timing and length of stay vary by diagnosis, airway, blood-loss profile and PICU availability. The MDT will confirm the plan for your child before each stage.
The problem
The right centre, the right timing, the right team.
Craniofacial care goes wrong in three ways — the wrong centre, the wrong window for surgery, and a missing member of the MDT. We help families get all three right from diagnosis.
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Was this the right first operation?
Cleft, synostosis and syndromic cases have known timing windows — we check the plan against national standards before you commit.
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Is the MDT actually complete?
Plastic, neurosurgery, maxillofacial, ENT, orthodontics, speech, psychology and genetics — a missing seat at the table shows up years later.
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Who owns the next twenty years?
A named specialist nurse and MDT coordinator at a designated centre — not a series of one-off appointments.
The pathway
From diagnosis to adult transition — the plan across two decades.
One MDT, one named coordinator, one plan — with clear timing for each stage.
Phase 1 · Antenatal and neonatal
Diagnosis, referral, feeding and airway
Phase 2 · Early surgery
First operations in infancy
Phase 3 · Childhood and transition
Interval work, then adult services
- 01
Diagnosis
Antenatal or newborn diagnosis
Cleft is often seen on the 20-week anomaly scan; craniosynostosis and syndromic features may be picked up at birth or in the first months.
- 02
Diagnosis
Referral to a designated centre
Care is directed to a supra-specialist NHS craniofacial or cleft network. First MDT contact usually within days of diagnosis.
- 03
Diagnosis
Feeding, airway and imaging worked up
Feeding support for cleft, airway assessment for Pierre Robin and syndromic babies, plus CT or MRI where craniosynostosis or hydrocephalus is suspected.
- 04
Early surgery
Primary surgery in infancy
Cheiloplasty at three to six months, palate repair at six to twelve months, or fronto-orbital advancement for craniosynostosis in the first year.
- 05
Early surgery
Paediatric anaesthesia and PICU cover
Long procedures with careful blood-loss management, done in a hospital with paediatric intensive care on site.
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Childhood / adult
Interval procedures through childhood
Alveolar bone graft at eight to ten years, speech and hearing review through childhood, midface or mandibular distraction in older children if indicated.
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Childhood / adult
Transition to adult services
Orthognathic surgery in the teens if needed, then a planned handover from paediatric to adult craniofacial and maxillofacial follow-up.
Typical arc: antenatal or neonatal diagnosis to adult transition around age 18, with staged operations along the way.
Conditions covered
The birth defects a craniofacial team treats.
The commonest conditions we see, plus the airway and ICP red flags that mean urgent paediatric review.
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Cleft lip and palate
Uni- or bilateral cleft of the lip, alveolus and palate — feeding advice at birth, cheiloplasty at 3–6 months, palate repair at 6–12 months.
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Non-syndromic craniosynostosis
Early fusion of one suture — metopic (trigonocephaly), sagittal (scaphocephaly), coronal (plagio- or brachycephaly), lambdoid.
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Syndromic craniosynostosis
Apert, Crouzon, Pfeiffer, Muenke, Saethre-Chotzen — multiple sutures, midface hypoplasia, airway and hand anomalies.
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Hemifacial microsomia (Goldenhar)
Asymmetric underdevelopment of the mandible, ear and soft tissues on one side — staged reconstruction through childhood.
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Treacher Collins syndrome
Bilateral malar and mandibular hypoplasia with ear anomalies — airway, hearing and staged reconstruction.
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Pierre Robin sequence
Micrognathia, glossoptosis and airway obstruction — positioning, palate repair, sometimes mandibular distraction.
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Positional plagiocephaly
Deformational — not synostosis. Repositioning first, helmet in selected cases, surgery almost never indicated.
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Red flag: airway or raised ICP
Stridor in Pierre Robin or Apert, or signs of raised intracranial pressure in multisuture synostosis — same-day paediatric assessment, not a routine wait.
Procedure options
The staged operations, in plain language.
Craniofacial care is a sequence — each step listed here is chosen for a specific condition and window in childhood.
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Cheiloplasty (Millard rotation-advancement)
Primary lip repair at three to six months, restoring the philtrum, Cupid’s bow and nostril sill.
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Palatoplasty (Furlow double-opposing Z-plasty)
Palate repair at six to twelve months, lengthening the palate and re-orienting the levator sling for speech.
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Alveolar bone graft
At eight to ten years, iliac-crest bone into the alveolar cleft to support the erupting canine and stabilise the arch.
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Fronto-orbital advancement
Skull vault and orbit remodelled in the first year for metopic, coronal or multisuture synostosis, protecting the growing brain.
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Monobloc and Le Fort III advancement
Midface brought forward in Apert or Crouzon to correct exorbitism, midface retrusion and airway obstruction — often with distraction.
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Mandibular distraction osteogenesis
Gradual lengthening of the mandible for Pierre Robin, hemifacial microsomia or syndromic OSA, avoiding tracheostomy where possible.
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Orthognathic surgery in the teens
Le Fort I, BSSO or bimaxillary surgery at skeletal maturity to correct residual midface or mandibular discrepancy.
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Craniofacial MDT review
Coordinated assessment by plastic, neurosurgical, maxillofacial, ENT, orthodontic, speech, psychology and genetics teams — the plan, not a single operation.
The designated centre standard
What a proper craniofacial unit looks like.
Craniofacial and cleft networks are commissioned nationally to a small number of centres. These are the four things every one of them provides.
Centre standards
The four things a designated craniofacial centre must have.
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NHS supra-specialist commissioned craniofacial or cleft network centre
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Consultant paediatric plastic surgeon, neurosurgeon and maxillofacial working together
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Paediatric anaesthesia with on-site PICU and paediatric ENT cover
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Speech and language, audiology, orthodontics, psychology and clinical genetics on the MDT
Safety and red flags
The things worth watching for, honestly.
Craniofacial surgery in the right hands is safe, but the conditions themselves carry airway, ICP, feeding, hearing and developmental risks. Knowing what to watch for is half the plan.
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Airway is the first priority
In Pierre Robin, Apert and Treacher Collins the airway can be tenuous — assessment happens before any elective surgery is planned.
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Raised intracranial pressure
Multisuture and syndromic craniosynostosis can raise ICP — surveillance with ophthalmology, imaging and sometimes ICP monitoring is part of the pathway.
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Hydrocephalus in syndromic cases
Crouzon, Pfeiffer and Apert have higher rates of hydrocephalus — neurosurgery reviews imaging and shunt indications alongside the vault work.
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Feeding failure in cleft
A cleft palate makes suckling inefficient. Specialist bottles and cleft nurse support are arranged in the first days of life to protect weight gain.
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Hearing loss is common
Cleft palate and Treacher Collins are strongly associated with glue ear and conductive loss — audiology through childhood is not optional.
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Speech and developmental follow-up
Velopharyngeal insufficiency after palate repair, and developmental delay in syndromic children, are picked up by planned reviews, not chance.
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Distraction hardware complications
Distractor pin infection, device failure and scarring are recognised risks — a clear plan for hardware removal is part of the consent.
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Tracheostomy is sometimes needed
For severe syndromic airway obstruction a tracheostomy may be the safer route — mandibular distraction is offered where it can safely avoid one.
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Red flags
New stridor, apnoea, feeding refusal, bulging fontanelle, or a papilloedematous fundus are urgent — same-day paediatric review, not the next clinic slot.
Reading the MDT letter
The MDT letter in four parts. Read the last one first.
Craniofacial letters can be dense — the plan for the next step is always at the end.
A quiet reminder
MDT letters are written for other clinicians — we translate them into what happens next.
If you would like us to talk you through the letter before the next appointment, just ask.
- 01 Header
Diagnosis and MDT summary
The condition — cleft, specific synostosis, named syndrome — and the MDT members who reviewed the child.
- 02 Technique
Procedures done and technique
Which operation, which technique (Millard, Furlow, fronto-orbital advancement, distraction) and any hardware used.
- 03 Findings
Airway, ICP, hearing and feeding notes
What was found on airway assessment, ICP surveillance, audiology and feeding review — the things that steer the next step.
- 04 Impression
The next steps in the pathway
Read this first: the next planned procedure, review interval, and which specialties own which piece of follow-up.
Recognised by major UK insurers
Craniofacial surgery for birth defects is delivered on the NHS at designated centres. Private insurance is rarely the pathway — cover is usually for private outpatient MDT review or second opinion.
Frequently asked
Everything families ask about craniofacial surgery.
Quick answers on timing, MDT, syndromic care, speech, hearing and when to worry.
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What is craniofacial surgery for birth defects?
It is the paediatric subspecialty that treats congenital differences of the skull, face and jaws — cleft lip and palate, craniosynostosis, and syndromes such as Apert, Crouzon, Pfeiffer, Treacher Collins, Goldenhar and Pierre Robin. It is delivered by a full MDT, not a single surgeon.
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When is the first operation done?
For cleft lip, usually at three to six months. For cleft palate, at six to twelve months. For craniosynostosis, fronto-orbital advancement is typically done in the first year. Timing is set by the airway, growth and the specific diagnosis.
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Where is craniofacial surgery done in the UK?
It is an NHS supra-specialist commissioned service, delivered at a small number of designated craniofacial and cleft network centres. Care outside a designated centre is not standard.
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What is the difference between craniosynostosis and positional plagiocephaly?
Craniosynostosis is early fusion of a skull suture and often needs surgery. Positional plagiocephaly is flattening from lying position — it does not fuse sutures, and is managed with repositioning and occasionally a helmet, not surgery.
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Do children with Apert or Crouzon always need multiple operations?
Usually yes. Syndromic craniosynostosis follows a staged plan — vault expansion in infancy, midface advancement (monobloc or Le Fort III) in childhood, and orthognathic work at skeletal maturity — with airway and hearing care alongside.
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What is mandibular distraction and when is it used?
The mandible is cut and slowly lengthened with a distractor over two to four weeks. It is used in Pierre Robin sequence and syndromic OSA to open the airway and, where possible, avoid a tracheostomy.
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Will my child need speech therapy after palate repair?
Very often, yes. Speech is monitored from toddler years and, if velopharyngeal insufficiency develops, further surgery (pharyngeal flap or sphincter pharyngoplasty) or targeted therapy is planned.
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Is hearing loss common with cleft palate?
Yes. Glue ear and conductive hearing loss are common because the palate muscles that open the Eustachian tube are disrupted. Audiology review is a routine part of the pathway.
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Who is in the craniofacial MDT?
Paediatric plastic surgeon, neurosurgeon, oral and maxillofacial surgeon, ENT surgeon, orthodontist, speech and language therapist, clinical psychologist, clinical geneticist, specialist nurse and paediatric anaesthetist — coordinated through the network centre.
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When should we ask for urgent review?
Any new stridor, apnoea, feeding refusal, bulging fontanelle or visual concern needs same-day paediatric assessment. In infants with Pierre Robin or a known syndromic diagnosis, treat any airway change as urgent.
Related treatments
Looking for something else?
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Craniofacial surgery
The full craniofacial subspecialty overview.
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Craniosynostosis repair
Vault expansion and fronto-orbital advancement.
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All tests and procedures
Every test and procedure we cover.
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Nothing quite right?
Tell us what you are looking for and we will point you in the right direction.
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Acne
Related condition guide.
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Eczema
Related condition guide.
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Mole Check
Related diagnostic test.
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Mole Mapping
Related diagnostic test.
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In practice, in London
The London pathway for craniofacial surgery for birth defects
For craniofacial surgery for birth defects, the private London route is mostly about consultant fit and hospital choice rather than raw waiting time. Waiting lists on the NHS for craniofacial surgery for birth defects vary widely by borough and by how the GP letter reads. Privately in London, we can normally offer a slot inside the same week, sometimes within 48 hours if there’s a cancellation. The difference isn’t clinical quality — the consultants are frequently the same faces you’d see on the NHS — it’s the calendar.
In practice, a private craniofacial surgery for birth defects appointment in London means a named consultant, a proper hour in the room (or the equivalent on a video call), and a report you can actually read. Most of the imaging suites and endoscopy units we use sit within a mile of Harley Street or in Chelsea and Fulham, and turnaround on findings is measured in days, not weeks. For craniofacial surgery for birth defects in particular, we bias towards consultants who do this every week rather than every month.
The value of going through a concierge for craniofacial surgery for birth defects isn’t access — anyone with an insurer or a credit card can get a private appointment in London. The value is knowing which consultant reads this particular presentation best, which unit turns reports around fastest, and which pathway won’t hit a dead end if the findings point somewhere unexpected.
Nearby in the library