A cleft lip and/or palate happens very early on in pregnancy where the two sides of the baby’s lip and/or palate do not join together properly. A cleft of the lip can be on one side (unilateral) or both sides (bilateral). It can be as small as a notch, or may extend up into the nose.
The palate forms the roof of the mouth. It consists of two parts: the hard palate towards the front, and the soft palate towards the back. Some clefts only go part of the way through the palate while others may go through the lip, gum and palate.
Babies can be born with a cleft lip only or with a cleft lip and a cleft palate. Some babies are born with a cleft palate only, but this is almost never picked up on an ultrasound scan during pregnancy.
In the UK, around 1 in 700 children are born with a cleft lip and/or cleft palate. Of these, about 24% have a cleft lip only, 45% will have a cleft palate only and 31% will have a cleft lip and palate. A bilateral cleft lip and palate is the least common type at 9%. (Cleft Lip & Palate Association, 2020).
What causes a cleft lip and/or palate?
It is still unknown exactly what causes a cleft. On-going research suggests that it is caused by a combination of environmental factors and genetics. Sometimes it is caused by being part of a syndrome.
What is the chance of another baby being affected?
For most children born with a Cleft Lip and/or Palate it is an isolated problem. Isolated means that the cleft is the only problem they have. In this situation, although we are usually unable to say why the cleft has occurred, the risks of another child being affected are likely to be low.
In a small number of families there is a higher chance of having more children affected by a cleft. Families with a higher chance of having another child with a cleft are those where one or more of the following apply:
In some families there may be a genetic cause for the cleft. This means either that the cleft is part of a recognised pattern of problems for which there is a genetic diagnosis, or the cleft is associated with a change in a chromosome or a gene.
Genes are tiny packets of inherited information that are passed from parents to children. Chromosomes are the structures that carry the genes in our bodies. Identifying a genetic cause for a cleft does not mean it is someone’s fault. Some genetic causes of cleft have a high chance of happening again, but others do not.
Finding a genetic cause for the cleft helps to accurately establish the risk of recurrence of similar problems in the family. If appropriate, it might also mean testing if the genetic change would be possible during a future pregnancy. Alternatively, a modified type of IVF called Preimplantation Genetic Diagnosis (PGD) might be available to stop the genetic alteration being passed on. If you have concerns about the risk of another baby being born with a cleft lip and/or palate in your family, you can follow this link to the All Wales Medical Genetics Service website.
Please let us know if you would like to be referred. You can contact the Cleft Team Co-Ordinator on 01792 703810.
The Journey Ahead
We have produced a separate chart that tries to show in simple terms the journey we will be sharing with you and your child over the years ahead. If you would like a copy of this, it is available by following this link to our Patient Journey page, or alternatively you can ask any member of the team for a paper version.
It is very important to recognise that every child is an individual and will follow their own unique journey. Any dates can only be approximate. At any stage, please feel free to ask one of the Cleft Team "where have we got to?" or "what happens next?".
Following any clinic appointments, we routinely send a letter to your child’s GP summarising the consultation. When the clinic appointment has been with a number of different professionals, known as a multi-disciplinary team (MDT) clinic, we will also send a summary letter to you.
Please tell us at any time if more than one person has what the law calls ‘parental responsibility’, with the result that separate copies need to be sent to different addresses. Sometimes, these can be difficult situations, so we need to insist that such requests are made in writing.