Hearing status among newborn children with an orofacial cleft and its relationship with speech at age 5: a study analysing linked national datasets.
Lead researcher: Sophie Butterworth
Institution: The CRANE database, The Clinical Effectiveness Unit, Royal College of Surgeons of England
Every year, more than 1,000 babies are born in the UK with a cleft lip and/or palate. Around three-quarters of these children have a cleft that affects the palate (the roof of the mouth). For these children, hearing and speech can be particularly affected — but we still don’t fully understand how early hearing problems might influence speech as children grow older.
Why hearing matters for children with a cleft
Children born with a cleft palate are much more likely to have problems with fluid building up behind the ear (often called glue ear). This can cause hearing loss, which may come and go, making it difficult for families and even doctors to detect unless the child is checked regularly.
Hearing loss at an early age can make it harder for children to learn to understand language, develop a good vocabulary, and express themselves clearly. These difficulties can sometimes continue into school life and affect learning and social confidence.
What we know so far
Many children with a cleft palate experience glue ear much more often, and at a younger age, than other children.
Some may also experience different types of hearing loss.
Research has already shown that children with a cleft palate can have very different speech outcomes at age five. Factors like the type of cleft, whether the hard palate is involved, and even the child’s sex can play a role.
However, we don’t yet know enough about how hearing problems in the early months of life affect speech development at age five.
In the UK, all babies are offered a hearing test shortly after birth through the Newborn Hearing Screening Programme. At the same time, the Cleft Registry and Audit NEtwork (CRANE) collects information about all children born with a cleft. CRANE also records speech outcomes at age five for many of these children.
For the first time, these two sets of information have been linked together. This gives researchers a unique chance to explore two important questions:
How many babies with a cleft palate have hearing loss detected at birth?
Does early hearing loss affect how well children with a cleft palate are speaking by age five?
By combining CRANE data with other health and education records, researchers also hope to learn whether treatments such as grommet operations (to drain fluid from the ear) make a difference to speech outcomes and even later educational progress.
If we can understand more about the link between hearing in newborns and later speech, we can:
Identify children most at risk and give them extra support from the start.
Ensure resources in audiology and speech therapy are directed where they are most needed.
Compare care across cleft centres in the UK, share best practices, and improve services for every child.
Early intervention is already known to improve speech, language and educational outcomes for children with hearing difficulties. This research could help make sure children with a cleft palate get the right help at the right time - giving them the best chance to thrive.
Our project aims were as follows;
-To quantify the number of newborns with orofacial cleft who have hearing loss detected and ascertain whether rates vary according to patient characteristics.
-To conduct a feasibility study to identify whether newborn hearing loss among children with clefting of the palate influences speech outcome at age 5?
For Aim 1, we have completed this analysis which is summarised in the CRANE Annual Report (CRANE Database - 2024 Annual Report).
For Aim 2, we have successfully linked hearing data and speech outcomes for almost 4000 children and the analysis of the data has been completed. The findings are being prepared for publication.
As planned, we have involved the ENT/Audiology Clinical Excellence Network (CEN) and the Speech and language therapy CEN throughout the period of this research.
Linking National Datasets to Investigate the Association between Hearing and Speech Outcomes in Children Born with a Cleft
This CLEFT-funded research project has provided, for the first time, a national picture of newborn hearing outcomes for children born with a cleft in England. By linking two major datasets – the Cleft Registry and Audit NEtwork (CRANE) and the Newborn Hearing Screening Programme (NHSP) – the researchers analysed data from nearly 12,000 children, creating one of the most comprehensive studies of its kind.
The study found that one in four babies born with a cleft did not pass their newborn hearing screen, and that around one in five had a hearing loss identified in early life. Permanent hearing loss was found to be up to 20 times higher than in the general population, especially among children with cleft palate, right-sided clefts, or associated syndromes. The research also revealed that more than a quarter of children with cleft palate were not receiving an appropriate early audiology assessment, highlighting an important area for service improvement.
The research team also showed that in children with a cleft there was an association between hearing impairment in early life and UK cleft speech standards at age five. These findings reinforce the importance of early hearing checks, timely interventions, and ongoing speech and language support for children born with a cleft.
The results have already been shared widely – at national and international conferences, through CRANE reports for parents and professionals, and with ENT and audiology networks to inform clinical practice.
The work has also contributed to the lead researcher being awarded a prestigious NIHR Doctoral Fellowship, ensuring that this vital line of research will continue for the next four years.
This work will be used to strengthen risk adjustment models for speech outcome reporting in the UK in the future. Also ideal hearing outcome measures, which is an area that is currently lacking within the CRANE dataset, has been produced with the ENT/Audiology CEN for use in Cleft Services and will be built into the CRANE Database in 2025.