Every year, approximately one in 700 babies are born with a cleft lip or palate globally. Despite such a large number being affected by this condition, there are still many people who are unfamiliar with clefts – and how they can seriously impact a child’s life if they do not have access to comprehensive cleft care.

With Cleft Lip and Palate Awareness Week falling earlier this month, we believe that now is an excellent time to address this widespread issue – by boosting everyone’s knowledge of the condition.

With that in mind, below our CEO, Susannah Schaefer, explains everything you need to know about this condition – including its causes, associated complications, and the various treatments that are available.

What is a ‘Cleft’?

‘A cleft occurs when certain body parts and structures do not fuse together properly during foetal development. Clefts can involve the lip and/or the roof of the mouth, which is made up of both hard and soft palate. Cleft lip and/or palate can be unilateral, involving only one side of the mouth, or bilateral involving both sides.

‘Clefts are a common birth difference with an estimated 200,000+ new babies born with clefts every year globally. The vast majority of these children are from developing countries and many of them will never receive the reconstructive surgery and comprehensive cleft care they need to live full and productive lives.’

What are the causes?

‘There is no medical consensus on what causes a cleft lip and/or a cleft palate. However, most experts agree that the causes of cleft are multifactorial and may include:

  • Genes inherited from a child’s parents
  • Drug and/or alcohol use during pregnancy
  • Smoking during pregnancy (or exposure)
  • Maternal illness or infections
  • Lack of nutrition and Vitamin B (folic acid) during pregnancy

‘Although these factors may act as an explanation for some instances of cleft, in many cases the causes of cleft lip and/or palate to occur remain largely unknown and research is ongoing to better understand this condition.’

What are the complications associated with clefts?

‘It is often assumed that clefts are only a cosmetic condition; however, beyond the cosmetic differences, there are other possible complications that may be associated with cleft lip and cleft palate – including:

  • Difficulty eating – Children born with clefts often face challenges with feeding and can suffer from malnutrition, particularly in developing countries. These children may be unable to breastfeed or drink from a bottle properly because the roof of the mouth is not formed completely. Older children living with this condition often struggle with chewing and eating solid foods.
  • Hearing Loss – Children born with cleft palates are more prone to ear infections or excess fluid in the ears due to a dysfunction of the tube that connects the middle ear and the throat. Recurrent infections can then lead to hearing loss, which can negatively impact their hearing.
  • Speech problems – More than half of the children born with cleft palates will likely need therapy to improve their speech. Due to the opening of the roof of the mouth and the lip, muscle function may be decreased, which can lead to a delay in speech and language, and articulation problems.
  • Dental complications – Children born with clefts are more susceptible to dental anomalies and malposition (teeth not erupting properly), making them at an increased risk for dental caries and gum disease.
  • General wellbeing – Children born with clefts often face emotional challenges due to lowered self-esteem. Parents/guardians play a very important role in supporting the social growth of these children as they mature.’

How is the condition diagnosed?

‘Cleft lip and cleft palate are often detected during a mid-pregnancy ultrasound scan which is offered to women when they are between 18 and 21 weeks pregnant; however, this is not guaranteed as sometimes clefts can be difficult to detect. If a cleft isn’t identified at this stage, then it is likely that it will not be diagnosed until immediately after birth.

‘It is very common for mothers living in developing countries to learn that their child has a cleft after birth because they do not have access to the medical equipment or resources that can detect the condition.’

How can they be treated?

‘Most experts agree that cleft lips should generally be repaired around 3-6 months after birth. Cleft palates are typically operated on between 9 and 18 months of age. However, surgeries at even later ages are also successful treatment options for patients.

‘Children with clefts undergo a series of surgeries as they grow up. Depending on the severity of the cleft and other factors, a child could undergo a number of surgeries during his or her first 20 years. A team of medical experts should be involved in the treatment of children with cleft lip and/ or palate because the cleft can affect their nutrition, hearing, speech, dental development, appearance and self-esteem.

‘In the UK, when a cleft lip or palate is diagnosed, parents will immediately be referred to a National Health Service (NHS) specialist and their child will have received corrective surgery within a year of being born. This child will also be given a long-term care plan which outlines the various treatments and assessments they’re likely to need as they grow up.

‘However, unfortunately in other areas of the world, it is a very different story, and many children who are born with clefts are not as fortunate as those in the UK. Many families in developing countries do not have access to quality healthcare services or the resources to pay for proper cleft treatment.

‘To tackle this global issue, Smile Train is committed to empowering and training local medical professionals to provide safe, high-quality, surgical and comprehensive cleft treatment for children in developing countries living with cleft lip and palate. For 20 years, Smile Train has invested in hospital partnerships by providing education and training in areas where there is limited medical professional capacity, enabling partner hospitals to build long-term, sustainable infrastructures for year-round patient care. As a result of this approach, Smile Train has transformed the lives of more than one million children to date.

‘Smile Train will continue to grow essential comprehensive cleft care programs addressing the life-long care required by children born with clefts – dramatically improving their physical and psychological health, and providing them with the best chance to live full, productive lives.’