Cleft Lip and/or Palate

What is a cleft lip and/or palate?

A cleft lip and/or palate occur when the tissues of the mouth and/or lip do not form properly during early foetal development. A cleft palate is a hole in the roof of the child’s mouth so that there is a connection between the nasal cavity and the mouth. A cleft lip is when the top lips do not join together and a gap is left in the lip. Cleft lip and palate can occur together or separately within a new-born baby. If a child has a cleft lip only, they generally do not have any feeding or speech difficulties. However, a baby with a cleft palate will have difficulties with early feeding if the cleft is not surgically repaired. Often a child with a cleft palate (even if it has been repaired) will have some difficulties with speech production.

What are the common features of a cleft lip and/or palate?

Babies with cleft palate will generally have difficulty with sucking and swallowing (feeding) because they are unable to form a seal around the teat and produce the pressure and suck needed to extract the milk from the bottle or teat.
Children with cleft palate are more prone to ear infections which may affect hearing.
Cleft lips affect the physical appearance of a child and when repaired, the child will still have a scar. This can affect confidence and self esteem in some children.
Some children with cleft palate will have speech difficulties due to the structure and functioning of the palate. This often improves with surgical repair of the cleft. However, some children will need on-going Speech Therapy.
Children with a cleft palate may need orthodontic and dental treatment for teeth in the area of the cleft.

Common difficulties often (but not always) experienced by the child with a cleft lip and/or palate:

A child with cleft palate may have difficulties with hypernasality (i.e. too much air resonating in the nose) or nasal emission (i.e. air being pushed through the nose) during speech affecting how well they are understood and socialisation.
A child with cleft palate may present with compensatory articulation errors such as replacing many sounds with “back sounds” (i.e. where the tongue hits the back of the mouth and include sounds such as /k/ and /g/ and non-speech glottal sounds). These errors will affect intelligibility of speech.
A mother of a child with cleft lip and palate may have difficulties with bonding and is more at risk of post-natal depression. This can affect how the child and parent interact and may lead to a speech and/or language delay.
A child with cleft lip may have difficulties with socialising due to concern over facial appearance.

Management strategies that support the child with a cleft lip and/or palate (at preschool, school and/or home):

Children with cleft lip and/or palate and their families will be seen by a member of a cleft lip and palate team shortly after a diagnosis has been made pre or post the birth of the baby. This will usually consist of a number of specialists and may include a Speech Therapist, Ears Nose and Throat (ENT) specialist, Respiratory Physician, Plastic Surgeon, Maxillofacial Surgeon, Orthodontist, Dentist, Geneticist and Paediatrician.
Speech Therapy can help with any feeding issues before and after the cleft repair and to monitor speech production during the first years of life.
Development of Speech Therapy goals specific to cleft speech errors.
Development of specific strategies to help reduce speech errors occurring to be practiced at home.
During feeding a baby with cleft lip will often need the mother to block the cleft with a finger or breast tissue to allow a seal around the teat or nipple so that sucking can occur efficiently.

Speech Therapy approaches and activities that can support the child and/or their carer’s include:

Reduce hypernasality: Developing activities and strategies to help reduce hypernasality (i.e. too much air resonating or being projected through the nose): children with a repaired cleft palate will often still have difficulty with hypernasality during speech.
Strategies: Providing the family with strategies and techniques to increase and enhance communication with the child.
Improving speech clarity: Developing strategies to eliminate the over use of “back sounds” such as /k/ and /g/: children with cleft palate often present with backing (i.e where the tongue hits the back of the mouth) such that their speech contains lots of /k/ and/or /g/ sounds and other back sounds which affects their speech intelligibility.
Confidence: Assistance in developing confidence and self-esteem.
Feeding program to help the child to achieve a seal over the breast or teat of a bottle.
Liaising with educational staff and other professionals involved in the child’s care regarding the nature of the difficulties and ways to help the child to access the curriculum.

Why should I seek therapy for my child with a cleft palate or lip?

Diagnosis alone is NOT the solution. It simply opens the door to getting the help that is needed by arming all involved with the relevant information.

The ‘help’ still needs to be provided. The help that is provided (at least from a therapy perspective) will reflect:

First and foremost what medical intervention is needed.
What the parents/teachers/carers biggest concerns are for the child (i.e. what are the most significant functional challenges).
The specific areas that are problematic to the child (which will vary even within children with the same diagnosis).
The capacity of the child’s environments to meet the child’s needs.

If left untreated, the child with a cleft lip and/or palate may have difficulties with:

Learning to talk, speech intelligibility and clarity.
Self esteem and confidence when they realise their skills do not match their peers.
Bullying when others become more aware of the child’s difficulties.
Anxiety and stress in a variety of situations leading to difficulty reaching their academic potential.
Voice disorders

More specific implications of not seeking treatment will be influenced by the common difficulties that are most influencing your individual child.

For more information see the relevant fact sheets under areas of concern or refer to the other relevant resources section below.

What does the diagnosis of a cleft lip and/or palate really mean for the child?

Diagnoses are used to label a specific set of symptoms that are being experienced by a child.

This label than helps to narrow down and specifically tailor what:

Other issues commonly occur simultaneously.
Medication might be appropriate.
Therapies might help the child (e.g. Medical, Occupational Therapy, Speech Therapy, Psychology).
Course of intervention (medical and/or allied health) might be and what outcome might be expected (prognosis).
Can be done to help the child.

A diagnosis helps the child and their carers (parents, teachers, health professionals, carers) to:

Access information about the relevant cluster of symptoms.
Communicate the salient features of the child’s challenges to all people involved in the child’s care.
Possibly interpret certain behaviours differently in light of the diagnosis.
Obtain information about what can be done to help the child.
Determine specifically where and how to help the child.
Access funding or services that might not otherwise be accessible.