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, so 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.
Estimates on how many people with a cleft are affected by one of these conditions or syndromes vary wildly, but some statistics put it at around 15%. These are called ‘syndromic’ clefts (as oppose to the more common ‘asyndromic’ clefts). Having a cleft alone does not mean that an individual has one of these conditions.
Most of these affect individuals to varying degrees, with some people not even realising 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 on a child’s life very much. Other rare syndromes, such as Edwards Syndrome or Patau Syndrome, are much more serious.
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 since statistically just over half of people with a cleft lip will also have a cleft palate, expecting parents with a diagnosis of cleft lip may be told their child could have one of these other 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 just 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.