Cleft, short for cleft lip and palate, is one of the most common birth defects in the world. The name of our organization, “Deutsche Cleft Kinderhilfe”, translates to German Cleft Children’s Aid Society.
Children with cleft lip and palate are born on every continent in the world. Worldwide, it is thought that on average one of every 500 to 600 children born is born with cleft. Certain risk factors make cleft more likely in some regions than in others. For example the likelihood of a child having cleft is thought to be slightly higher in Asia and slightly lower in Africa.
The cleft lip was long colloquially known as the harelip. In German, the cleft palate was also known as a “Wolfsrachen”, a wolf’s maw. This sort of animal imagery is perceived as degrading by many patients with cleft lip and palate. These terms should therefore no longer be used to describe cleft lip and palate.
The term harelip can be found in old medical books from the 15th century. The association was not limited to the superficial visual resemblance of some clefts to a to a hare’s upper lip. There also was the superstition that cleft lip was caused by a pregnant woman having looked at or thought of a hare. Fortunately, this superstition was eventually overcome, but even in 1805 a doctor was forced to point out that if the superstition were true, the wives of hunters and butchers should have nothing but children with cleft, which was demonstrably false.
The term harelip however lasted much longer in colloquial and even medical usage and unfortunately is sometimes still used today. It should be avoided in favor of the correct terms “cleft lip” and / or “cleft palate”.
The exact causes of a case of cleft lip and palate cannot be clearly identified. A cleft is the result of a combination of factors. This is called a multifactorial origin. We know that a higher risk of cleft can be inherited from the child’s parents. Therefore intra-family marriages, that is marriages between relatives, which are still widespread in many countries, are a major problem.
Other, outside risk factors can further add to the risk before and during pregnancy. These can be for example pollution of the environment and food, unfavorable habits (alcohol, nicotine, other drugs), malnutrition and diseases of the mother which are often a problem in poor families, lack of oxygen at high altitudes and other effects.
The baby’s face is formed between the fifth and eleventh week of pregnancy. During this time, the lips are formed, as well as the front section of the jaw and the hard and soft palate. If the process is interfered with by one or more of the risk factors, a cleft can result.
As we have seen, a case of cleft lip and palate does not have one clear cause. Accordingly, there is no way to completely prevent them. The risk of cleft can at best be lowered, for example through measures such as vitamin supplements (for example folate, also known as vitamin B9), and a generally health-conscious lifestyle during pregnancy.
Unlike in the West, where prenatal care and maternity protection are mandated by law, women in our project countries can’t avoid many of the risk factors during pregnancy. They may not have enough food, or the food they can get may lack important nutrients. Many are exposed to pollution and environmental posisons. The expectant mothers rarely have access to medical care and are often forced to work hard until the birth under conditions that are harmful to health. As a result, many children with cleft lip and palate are born in our project countries.
There are more than 100 different forms of cleft, which in everyday language are all combined under the umbrella term cleft lip and palate. The differences between the types concern the location and the appearance of the cleft.
Cleft most often occurs in four places: Firstly, cleft lip, cleft lip and upper jaw, or cleft lip and palate usually happen at the end of the second month of pregnancy and affect more boys than girls.
Isolated clefts in the hard and soft palate happen at the beginning of the third month of pregnancy. They are less common, and occur a little more often in girls than in boys. The cleft can affect the hard and soft palate or be limited to the soft palate. See the picture below for the locations. The picture shows the roof of the mouth looking up from below, with the nose at the very top of the picture.
There are three levels of severity of a cleft lip and palate:
A cleft is a highly visible “flaw”. Depending on its size and severity the children are disfigured more or less. Because they are perceived as different, the children are often teased or shunned. Often they live their lives in isolation. The psychological and emotional stress for child and parents is enormous. Children who have no access to treatment or are treated late in life suffer more.
If the hard palate is affected there is no separation of the mouth and nasal cavity. This means that the muscles of the lips, tongue and palate do not work together properly, and there is often a change in the position of the tongue, which moves backwards into the cleft. Serious functional problems are the result: swallowing and breathing, sound formation and tone of voice are affected.
In babies the breathing and feeding problems can be deadly. Later in life, food leaking out through the nose can continue to be a problem and a source of shame for patients if the cleft is not treated. The difficulty in forming certain sounds means that speech development is impaired. Hearing deficits due to chronic middle ear infections worsen these problems. The children are often stigmatized because of their difficult to understand pronunciation and often nasal voice.
Together with the formation of scars due to the surgeries, these functional disorders can also lead to impairments in the position of the teeth and the development of the jaw and face as the child grows, requiring ongoing monitoring and care.
The surgery is the first and most important step for a child with cleft lip and palate. The lip is usually closed in the first three months of life. A cleft palate is closed between the eighth and eleventh month. More surgeries are often necessary later.
Thanks to our healthcare systems, the costs for the necessary treatments are covered by the health insurance in developed countries. This however is not the case all over the world. In many countries, parents have to pay for their child’s treatment themselves. But many families cannot raise the money. Without treatment, the children suffer from the mental and physical consequences of the malformation for their entire lives.
The most important part of the treatment is the surgery. Performed by a skilled, qualified surgeon like our partners are, it makes children with a cleft lip look “normal” again. If there is also a cleft palate, at least one further operation is required. An untreated cleft palate has serious consequences: the children cannot eat and drink properly and speak with difficulty.
Due to the many different health problems the patients have, many medical specialists have to work together closely in many therapy steps taken in the right order to repair the damage and get the best outcome for the child. The medical specialties involved include orthodontics, maxillofacial surgery, pediatrics, ear, nose and throat medicine / pediatric audiology, speech therapy / phoniatrics, psychology, pediatric dentistry and nutrition. Depending on the severity of the cleft, therapy can stretch into adulthood. For all types of cleft, regular routine check-ups are recommended until development is complete (19 to 21 years).
NAM stands for Nasoalvolear Molding. With this non-invasive treatment, the mouth and nasal cavity are separated in the first few days of life with an individually moulded plastic palate plate. This separates the functional spaces of the nose and mouth, which in turn helps the development of many functions that usually rely on the palate. In addition, the palate plate encourages the correct positioning of the tongue. This reduces the expansion of the cleft and normalizes the tongue function. As a result, development in the jaw area is more normal, and learning correct sound formation is easier.
In addition to guiding the growth of the jaw segments, the flattened nostrils of the child are raised during the NAM treatment. This has positive effects on nasal symmetry and overall leads to a better aesthetic outcome. Such early treatments can create better conditions for later surgery. Scarring is reduced, meaning that follow-up operations can be avoided. NAM is suitable for all forms of a cleft lip and jaw.
A NAM plate with a nose bridge should not be confused with a simple palate plate (also called “drinking plate”). This is used in the case of a cleft palate to make it easier for the baby to swallow or drink.
Exchange of experiences with other affected families can relieve stress and provide new insights. Suitable contacts can be made via the nationwide self-help association for lip and palate malformations of the Wolfgang Rosenthal Society and the IFUS e.V. society for the aid and support for cleft patients with contact points in Saxony, Saxony-Anhalt and Thuringia.
Caring for a child with cleft lip and palate is particularly demanding in the first few years and can also carry considerable financial cost. To address this, the federal government has created the so-called “degree of disability” („Grad der Behinderung“, GdB). Depending on the type of cleft, various degrees of disability can be applied for as the basis for financial aid. Depending on the care expenditure, a care allowance can be applied for.
Further information is provided by the German interdisciplinary working group for cleft lip and palate / craniofacial anomalies (AK-LKG). We thank the AK-LKG for giving us permission to use the pictorical material used on this page.
Children in developing countries often have no access to qualified treatment, and their parents receive no support. Proper treatment is out of their financial reach, medical infrastructure and qualified surgeons are often not available. In these countries, NGOs provide the necessary treatment to these children. This is where our aid comes in. We consider it our guiding principle that all cleft children, irregardless of their origin, have the right to medical care – as a prerequisite for a dignified, healthy life. To ensure that the aid provided is sustainable, we invest in local structures.
