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, an average of one case per 500 to 600 births is assumed. Certain regional risk factors favor the development of the malformation. As a result, the numbers are thought to be slightly higher in Asia and slightly lower in Africa.
The causes that led to the development of a cleft lip and palate cannot be clearly identified. Rather, a cleft is the result of a combination of factors. This is called a multifactorial origin. We know that a higher risk of the malformation can be inherited from the child’s parents. Therefore intra-family marriages, 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, drugs), malnutrition and diseases of the mother, 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 lip is formed, as well as the front section of the jaw and the hard and soft palate. If the process is disturbed 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 definite way to prevent them. The risk of cleft can at best be reduced 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 are unable to avoid many of the risk factors during pregnancy. They may not have enough food, or the food they can get may lack important nutrients. 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. Accordingly, 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 a little more common in girls. The cleft can affect the hard and soft palate or be limited to the soft palate.
There are three levels of severity of a cleft lip and palate:
The visible effects of a cleft lip on the appearance should be corrected by early surgery – ideally before the sixth month of life. Further corrections to the lip and nose may be necessary later. Misaligned teeth, especially in the upper jaw, are common and make dental care difficult.
If the hard palate is affected, there is no separation of the mouth and nasal cavity. This interferes with the interplay of the muscles of the lips, tongue and palate, and there is often a change in the position of the tongue. Serious functional problems are the result: swallowing and breathing, early sound formation and facial expressions are affected. That is why the closure of the cleft palate in a second procedure is so important.
Hearing deficits due to disturbed middle ear ventilation are common and can have a further negative impact on speech in addition to that of the disturbed interaction of the muscles. In combination 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.
Beyond the physical consequences, the psychological and emotional consequences for children and parents, especially in the first years of life, are considerable. Children who have no access to treatment or who are treated late suffer twice. Due to the obvious defect and possibly additional language difficulties, the children are often teased, marginalized and stigmatized as disabled.
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.
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 burdens. 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).
Children in developing countries often have no access to qualified treatment, and their parents receive no support. This is where our aid comes in. Regardless of their origin, cleft children should have the right to medical care – as a prerequisite for a dignified, healthy life.
