What happens in the UK?
Often a baby is diagnosed with a cleft lip while still in the womb (a cleft of the palate is rarely if ever identified on a scan). Scans can pick up the condition as early as 18 weeks. Support is available for the parents as soon as the condition is diagnosed so that everyone understands what is going to happen. A cleft lip or palate is not a life-threatening condition but a specialist will usually check the baby within a few days of birth and schedule the first operation. Breastfeeding may be impossible with a cleft palate so mothers may express and bottle feed the baby using specially adapted teats. In the UK cleft babies and parents are extremely well supported from the moment of diagnosis. CLEFT’s role is not basically to support families, this is very well filled by cleft teams and by the support group CLAPA
In the UK patients will be cared for until adulthood by a dedicated team of specialists. The team will include plastic surgeons, paediatricians, ENT surgeons, maxillofacial surgeons, geneticists, orthodontists, psychologists, speech therapists and specialist nurses. Cleft babies and parents have a full range of experts to advise and support them over the first 20 years of their child’s life, and beyond.
In the North Thames Cleft Unit a cleft lip is usually repaired at 3 months and a cleft palate at 6-9 months. Repair is obviously important for appearance, but also for teeth, hearing and speech.
At Great Ormond Street Hospital we work with sophisticated equipment such as an operating microscope in theatre and monitors in the recovery room. We use the microscope to make it easier to see and correct the abnormal positions of the muscles of the cleft palate. The North Thames team pioneered the use of the microscope.
After the initial operations, children are followed up by a multidisciplinary team which monitors speech, hearing, dentition, facial growth and general development.
They are seen at approximately 2 and half year intervals until they are aged 20. In many cases further surgery is necessary.
- Birth to 1 year: Surgery at 3 months on cleft lip and at 6 months on the palate
- 8 months: Speech and language assessment
- 2 years: Cleft clinic
- 3 years: Speech and language assessment
- 4 years: Cleft clinic
- 5 years: Audit. This is followed by a team review of the child’s record, an in depth discussion with parents and a review in clinic if necessary
- 7½ years: Cleft clinic and follow up surgery if necessary
- 10 years: Audit, team review of the child’s record, an in depth discussion with parents and a review in the clinic if necessary
- 12½ years: Cleft clinic
- 15 years: Audit, team review of the child’s record, an in depth discussion with parents and a review in the clinic if necessary
- 16 years: Cleft clinic
- 20 years: Final audit