Cleft Lip and Palate

Late diagnosis of cleft

When a baby is born with a cleft palate, health care professionals such as midwives, medical consultants, or other specialists hope to be able to diagnose the cleft within 24 hours of the birth. While a cleft lip is easily seen, there may be no external signs to indicate a cleft palate as it can occur without a cleft lip. Therefore, unless an experienced health professional looks inside the mouth and views the baby’s palate a cleft palate can go undiagnosed unless or until other issues arise. Babies born with a cleft palate will have difficulty feeding: they may not be able to latch on to the mothers’ breast (see ‘Feeding a baby born with a cleft’) and if they do manage to take some milk it may come out down the nose. Consequently, the baby may be difficult to settle and may be slow in putting on weight. Because only around one in seven hundred babies are born with a cleft lip or palate* midwifes and other health care professionals may have little or no experience of babies born with clefts or screening them for the condition.

Among the families we interviewed for this website some babies had their cleft palate diagnosed outside the 24 hour period after birth, sometimes weeks later and in two cases not until the child was older than 3 months. A late diagnosis of cleft palate can be a distressing event: the diagnosis may be unexpected and there are no immediate solutions for the problems they and their child are facing.
Before the diagnosis of cleft palate was made, some of the families we spoke to had experienced great difficulty in communicating their concerns about feeding their unsettled babies to health professionals including midwives, health visitors and general practitioners. Some health professionals, both within the hospital and in the wider medical community, had little or no knowledge or awareness of cleft palate and its implications. They sometimes missed or disregarded obvious signs such as milk and other foodstuffs escaping from the child’s nose when feeding and were reluctant to take parental concerns about feeding difficulties seriously. This lack of awareness was an obstacle that was difficult for new mothers to overcome and it left them feeling isolated and frustrated. 

Laura became frustrated because she was made to feel like a ‘paranoid first time mum’ by her G.P. and this attitude drove her to research and reach her own diagnosis. Laura eventually told her G.P. that her daughter had a cleft palate when she was 10 weeks old. 
In one of the families that took part in this study, a child was not diagnosed with a cleft palate until he was at school. A friend of his mother, who was also a teacher, had noticed that his voice was nasal and that he had problems with speech and particular speech sounds. Sometimes children with a cleft palate sound nasal (like they are talking through their nose) because the cleft allows air and speech sounds to escape through the nose rather than just the mouth.
Despite their very difficult experiences, the mothers whose children had received a late diagnosis of cleft all felt that their experiences should be used to help raise awareness of cleft palate. Some have been involved in training health professionals such as midwifes and general practitioners to become more aware of the signs and symptoms of cleft palate.
Some mothers also found the experience of having to fight to get their child diagnosed gave them more self-confidence.
Since these interviews the Royal College of Paediatrics and Child Health have produced guidelines on 'Palate examination: Identification of cleft palate in the newborn'  to ensure early detection of a cleft palate. A link to these guidelines can be found in our Resources section.

*World Health Organisation. Global Registry and Database on Craniofacial Anomalies Eds: Mossey PA, Castillia (2003). WHO Reports, Human Genetics Programme: International Collaborative Research on Craniofacial Anomalies, WHO publications, Geneva, Switzerland

Last reviewed June 2017.
Last updated June 2017.

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