Cleft Lip and Palate

Diagnosis of cleft and breaking the news

The initial diagnosis of a cleft lip or palate usually happens when the expectant mother has a scan at approximately 20 weeks of pregnancy. The ultrasound scan is generally conducted by a trained sonographer who can identify the appearance of a cleft lip. While an ultrasound scan can detect the image of a cleft lip it cannot reliably detect a cleft palate. Sometimes further scans such as MRI and 3D scanning are offered to families, particularly if there is a concern that the baby will also have a cleft palate and more detail is required. 
It is common for a sonographer to contact a senior sonographer or another health professional (sometimes a consultant paediatrician, obstetrician, or surgeon) when a pre-natal scan shows a potential diagnosis of cleft lip and often a specialist scan is then offered. A senior health professional will break the news to the parents at this appointment. Some families we spoke to were referred to genetic counselling services particularly if there was a family history of Pierre Robin Sequence, Stickler syndrome, 22q11 deletion syndrome, or a history or risk of other associated genetic conditions. However, these syndromes are not usually detected antenatally.

Parents who received the diagnosis of cleft at their scan appointment felt that there was often a lack of empathy and understanding about the reality of having a child born with a cleft lip and or palate. For example, conversations about the risk of the baby being born with a condition associated with cleft were not handled very well.
Three families were asked to consider abortion. Not surprisingly this was a cause of significant distress: parents were asked to consider the life of their baby without having had time to understand the diagnosis of this non-life-threatening condition, its consequences, or to think about its impact. The standard of care for children born with a cleft and levels of public awareness are improving. For most of the parents we interviewed cleft lip and palate does not affect the quality of life of the child to the extent that they would have consider life to be not worth living. 
In the time between the scan and the visit from the CNS, many parents try to find out more about cleft lip using the internet. This too can be distressing for families, particularly as the pictures found on the internet may be extreme or show more unusual cases of cleft. See ‘Diagnosis of cleft and impact on pregnancy’. 

Some families said that they were given too much spoken information at diagnosis and this could be overwhelming. Others felt that they would like more information in the form of pictures and leaflets. Some suggested that information about well-organised and reliable websites such as the Cleft Lip and Palate Association or Changing Faces should be given out at this time.
After diagnosis at this stage of the pregnancy the sonographer or health professional should inform a Clinical Nurse Specialist (CNS): parents are usually then visited at home by the CNS within 24 hours of the diagnosis.

​Last reviewed June 2017.
Last updated June 2017.

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