Cleft lip and/or palate are listed as symptoms of over 400 various conditions and syndromes, although some are extremely rare. This means the cleft itself is caused by the condition or syndrome. When figuring out how likely a person with one of these is to pass on their cleft, you have to look at how likely they are to pass on the condition or syndrome first.
It is estimated that around 15-30% of people born with a cleft are affected by one of these conditions or syndromes. Having a cleft alone does not mean that an individual has one of these conditions. Most people born with a cleft are ‘non-syndromic’ or ‘asyndromic’, meaning it isn’t linked to any wider issues.
Most of these syndromes and conditions affect people to varying degrees. Some people do not even realise they have issues other than their cleft. Some conditions which involve a cleft, such as Pierre Robin Sequence, can make early months a struggle but otherwise do not have to impact a child’s life very much. Other rare syndromes, such as Edwards Syndrome or Patau Syndrome, are much more serious, but these are routinely tested for during pregnancy.
For most of these conditions, cleft palate (not cleft lip) is listed as a symptom. It is very difficult to detect a cleft palate before birth, but statistically just over half of people with a cleft lip will also have a cleft palate. Expectant parents with a diagnosis of cleft lip may, therefore, be told their child could have another conditions. The chances of any of these will be different for each set of parents. As with a cleft lip and palate, sometimes there will be a clear genetic link and sometimes it will happen as a one-off in families.
If you have concerns or questions, talk to your Cleft Team (or ask for a referral if you have not yet been put in touch with them) as they will be able to give you specialist information and advice.