Detection of a child with a cleft by ultrasound is possible as the shape of the face is detectable by the 14th week of pregnancy. Parents may well have been advised that their child will have a cleft. This does help parents come to terms with the shock of having a child with a cleft. It does however remain common for them to experience feelings of guilt and regret and they often require time to effectively grieve for the loss of the anticipated ‘normal’ child. Parents may at this time be helped by taking photographs of the child with the cleft as this child effectively vanishes once the initial repair has been carried out.
At the point of diagnosis, home support by a specialist health visitor to assist with bonding between parents and child and help with feeding is useful. Directed flow of milk into the mouth using soft bottles and positioning the child will allow the child to be adequately nourished. A range of useful bottles and teats are available and can be obtained in the UK from the Cleft Lip and Palate Association, a cleft support group. At this stage a brief but positive explanation of the process by which the child’s cleft will be repaired over time is essential.
Most centres in the UK have limited active intervention at this time although world-wide a variety of pre-surgical orthopaedic techniques have been advocated at this point. Although practice varies throughout the world these are not currently in vogue in the UK. In Germany pre-surgical nasoalveolar molding (NAM) therapy is becoming increasingly popular. The first long term results from New York look very promising. The practice in the USA varies considerably.
Timing of Surgery
The precise details of the timing of surgery will vary depending on the individual case. A commonly used protocol includes:
- lip and / or alveolus and / or soft palate repair at three to six months old;
- repair of residual palatal defect at nine to twelve months old;
- audiology +/- myringotomy (drainage incision in the ear drum) either at this time or as indicated by audiological assessment;
- formal speech assessment around two-years old;
- pharyngeal surgery if indicated by speech and language therapy assessment at four to five-years old;
- alveolar bone grafting assessment at age eight years, followed by actual alveolar bone grafting between the ages of nine and eleven;
- definitive orthodontics with or without orthognathic surgery between the ages of 15 and 18-years old;
- definitive rhinoplasty plus definitive restorative dentistry at age 18-years plus.
Next section: Cleft lip/palate