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Frequently Asked Questions - FAQs

We have asked our Cleft Team to answer some of the most frequently asked questions about cleft lip and palate. Click on the questions below:
coloured face My child has been diagnosed with cleft lip at the 20 week scan. Does this mean he will have a cleft palate as well?
  Scans are unreliable in diagnosing clefts of the palate. Clefts of the lip can reliably be diagnosed by scanning. However, a definite answer about whether your child has a cleft palate cannot usually be given before birth.
coloured face Will my baby have anything else wrong with him?
  Most babies do not have anything else wrong with them. The likelihood of having other organ development problems, in addition to the cleft, varies with the type and extent of the cleft. A cleft lip by itself has a likelihood of 1 in 10 of another abnormality, a cleft lip and palate 1 in 4, and a cleft palate without a cleft lip about 1 in 3. If a cleft lip is found during the pregnancy the foetal medicine specialist will investigate, and after the birth the paediatrician or the cleft team may arrange assessment and investigations if they consider it appropriate.
coloured face Why do clefts happen?
  We don’t know exactly why they happen, but we know that the lip, nose and the gum form at 5-6 weeks gestation and the palate forms at 7-8 weeks and for some reason this process may fail completely or be interrupted at any stage. This produces a variety of incomplete, unilateral and bilateral clefts that make up the 1 in 700 babies born every year with this diagnosis.
coloured face Will there be complications such as breathing difficulties at birth? back to top
  The likelihood of breathing difficulties for babies with a cleft lip only or cleft lip and palate are very low indeed, and if present, would prompt the doctors to look for causes other than the cleft.

The situation with a cleft palate alone can be different. Some babies, with only a cleft palate, have a risk of breathing complications. (This can arise from a condition sometimes referred to as “Pierre Robin Sequence”). This risk is well recognised and you should expect to receive advice from the paediatrician at the time of delivery to ensure proper care for your baby. The breathing difficulty is often eased by changing the baby’s position, but this should only be done after medical consultation and agreement.

coloured face At birth, will my baby be in pain?
  No. A cleft is not an open or raw wound; it is simply a failure of tissue joining.
coloured face Breastfeeding, can I still do it?
  Babies born with a cleft lip should be able to breastfeed as normal. Babies born with a cleft palate, a cleft lip and palate or submucous cleft palate are unable to create the negative pressure required to draw milk from the breast or hard bottle and therefore their nutritional requirements would not be met.

However, mothers are encouraged to put the baby to the breast for suckling and bonding between mother and baby. Mothers should also be encouraged to express their breast milk to give to baby via other means.
coloured face Does it hurt if milk or food goes into the nose? back to top
  Expressed breast milk does not appear to irritate the nose, but may cause some sneezing. Baby formula may cause a little more irritation. A little cooled boiled water may help clear the nose.
coloured face Will they be more prone to minor ailments?
  No, normal baby immunisations and baby checks should be adhered to.
coloured face Will my baby always have a scar?
  Yes, the scar looks worse at around 2 -3 months, but it will settle over the next year. Scarring fades depending on the individual skin type. Current practice is to leave scar tissue to settle on its own without any intervention.
coloured face When will my baby have surgery?
  In the North Thames Cleft Team the lip will be repaired at 3 months and the palate at 6–9 months. The gum will be repaired at around 8–10 years.
coloured face How long is the operation? back to top
  For each operation, your child will be away from you for approximately 2.5 hours. Depending on the operation this could be a little longer, but this will be discussed with you prior to surgery.
coloured face How long are they in hospital for?
  Depending on the surgery this could be 1-2 nights in hospital, post operatively.
coloured face Weaning?
  We advise to start the weaning process at the age of 17 weeks, on discussion with your Cleft Nurse Specialist who will give you specific support and advice.
coloured face Will my child’s teeth grow normally?
  If the cleft goes through the tooth bearing portion of the upper jaw (The Alveolar Process) then you may expect some disruption to the teeth. There might be a missing tooth, possibly some small extra teeth might develop in slightly odd positions around the cleft site. We do nothing about these problems during baby tooth phase (0 – 7 years of age). Similar problems may occur when the permanent teeth erupt. These are addressed at the time bone grafting. See below for further information.
coloured face What is going to happen about the gap in the gum?
  Any gap in the gum that involves the jaw bone will be filled by a small bone graft, (Alveolar Bone Graft, ABG), from the hip bone when the child is between 8 – 10 years of age. This permits the normal development of teeth. A short burst of orthodontic treatment may be required before bone grafting.
coloured face Will my child need a bone graft?
  Children with a cleft palate which does not go through the gum do not need a bone graft. If, however, the gum is affected a bone graft may be required. Children with only a cleft lip do not need a bone graft.
coloured face If my child needs a bone graft when will it be done? back to top
  If required, a graft usually takes place when the child is between 8-10 years of age. Precise timing is determined by a detailed X-ray at about 7.5 – 8 years of age.
coloured face Are the teeth of children who have a cleft lip and/or palate of poorer quality than the rest of the population?
  No, but like any other child it is best to avoid sweets, biscuits and sugary drinks taken between meals.
coloured face Can my 5 year old have his crooked teeth straightened?
  Baby teeth are shed and therefore not treated. Straightening is considered to cause unnecessary stress to the child and family and there is little lasting benefit.
coloured face Should my child see a local dentist or is all the care undertaken at the hospital?
  Please see a local dentist for regular check ups. If there are special concerns your dentist can refer your child to our specialist children’s dentist.
coloured face My child’s upper jaw is set back behind his lower jaw which sticks out. Why is this and what can be done about it? back to top
  Cleft lip and palate can cause the upper jaw to be smaller than the lower jaw. This is due to the upper jaw failing to grow at the same pace as the lower jaw. Mild discrepancies in jaw relationships are treated by orthodontics alone. More significant discrepancies are surgically repaired when the child has stopped growing at around .
coloured face I’m worried that my child may be teased or bullied at school. What should I do?
  Advice from our GOS child psychologist:
"My advice is that having a cleft lip/palate does not mean that bullying will definitely occur, so don't assume it will happen. However it is important to ensure that, particularly when starting a new school, you check that your child knows what they might say or how they would respond should anyone ask them about the scar on their lip or their speech, even if this is done out of curiosity rather than in order to be nasty. Often children mistake curiosity for bullying. Check with the child whether or not someone was simply asking or trying to upset them. Children may stare or ask, but it is not always meant to upset.

It is therefore very important to ensure that your child has an age-appropriate, brief explanation to give others whether the comment is made out of curiosity or a desire to be nasty. We would encourage a sentence along the lines of: "I had an operation on my lip when I was a baby". If there are speech concerns, try: "I had an operation on the roof of my mouth when I was a baby". From experience that is usually sufficient to prevent further questions, but if anyone was to ask ‘why?’ the response could be: "I had a little gap in my lip when I was born” or “I had a little gap in the roof of my mouth when I was born". If your child responds in a calm and friendly manner, other children routinely take their lead from them and respond in the same way. Smiling at people who stare is a really good way of making staring in to a more positive experience and informing people without words that you are friendly, approachable and no different to anyone else.

Should bullying occur, do not expect your child to tell the teacher. Research shows that children find this very difficult. Ask your child to keep a diary of events at home. Speak confidentially to a teacher your child likes and trusts and ensure that the school takes responsibility for any bullying. We know that ignoring comments, getting upset or being rude back does not work. But responding to rude remarks, as I have mentioned above, often works to reduce episodes.

Children should know that it is not their full responsibility to manage bullying and the school must be made aware of it. If bullying has happened in the past, you may want to speak to a teacher to advise them of this and ask that they keep an eye out for any possible difficulties. If bullying does occur, keep open and honest communication up and ensure you encourage your child to build self-confidence by joining clubs outside of school and help them to practice the strategies discussed. If necessary, get in touch with your Cleft Service and request an appointment with the Clinical Psychologist for further advice."

coloured face I feel I would like to contact a parent who has been through a similar experience. What shall I do?
  Clapa-gos has parents who have been through a similar experience. They are available to talk to you if you wish. Go to our Parent Contacts page for information.
coloured face I feel that my child would benefit from meeting other children who have a similar condition. How can they do this? back to top
  CLAPA National has a number of initiatives especially for children. These include drama workshops and summer camps. Visit CLAPA Head Office and also visit our News page for further information.