Cleft Lip and Palate

Telling other people about a diagnosis of cleft lip and/or palate

Anticipating the birth of a new baby is an exciting time and one that is associated with good news. This expectation can be overshadowed if parents receive a diagnosis of cleft lip and/or palate for their child: telling other people the news that your child is to be born or was born with a cleft lip and/or palate can be challenging and emotional. However, this experience may also have positive aspects: in telling other people such as family, friends, and antenatal groups families can be on the receiving end of much needed emotional and practical support. If you feel that you need or would like to talk to someone who has personal experience of a diagnosis of cleft, there are parent contacts at the Cleft Lip and Palate Association and they can put you in touch with other families in your area. 
Some mothers felt that they were ‘public property’ during the pregnancy such that it was common for family, members of the public and colleagues to ask how the pregnancy was going and be interested in scan results. 
If a diagnosis of the cleft was made during a scan parents sometimes felt it was difficult to talk about the results to family and friends as they were often unaware of the extent of the cleft: a routine ultrasound scan can only reliably detect a cleft lip. Similarly, after the birth, the extent of the condition may still remain unknown: the baby could also have a cleft palate as well as a cleft lip, there may be hearing and feeding issues as well as a need for dental care and speech therapy. In rarer cases other conditions and syndromes such as Pierre Robin Sequence (PRS), Stickler syndrome or 22q11 deletion syndrome may also be diagnosed but most babies born with a cleft do not have other problems.

There is also little public knowledge and understanding about cleft lip and palate and so parents sometimes find themselves having to try and explain a visible cleft. Parents are sometimes aware of negative comments about the way their child looks from people they don’t know well (See ‘Social interaction and public awareness’).
The causes of cleft lip and/or palate are not fully understood and so it is sometimes difficult for parents to explain that the reasons for the cleft are unknown. 
Similarly, it can also be difficult for mothers to explain why they were not breastfeeding their child. 
The lack of awareness of cleft lip and palate is also associated with cultural beliefs and the lack of provision for cleft services in other countries. For example, a non-British citizen said that she would have been encouraged to terminate her pregnancy or offer her child up for adoption in her home country. 
However, discussion of a child’s cleft, treatment pathway and future outcomes can be a much more positive experience if it takes place within a supportive environment. By discussing the diagnosis and implications of cleft with specialists from the cleft team and other families in a similar situation parents can become more informed and develop a much clearer understanding of what the future holds for their child. 
Last reviewed June 2017.


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