The Foundation for the Disabled Child (Stiftung für das behinderte Kind) was founded in 1967 with the primary aim of delivering speedy and unbureaucratic assistance to children damaged by thalidomide. For over 40 years, the Foundation has supported the early diagnosis, prevention and early rehabilitation of childhood disabilities.
Key areas of our work have been the introduction of genetic counselling during pregnancy, hearing tests for new born babies and the prevention of damage caused by a lack of oxygen. In particular, we have focused on support for scientific research in those areas and on information for the health care professions.
A generous gift from the children’s charity ‘Bild hilft e.V. – Ein Herz für Kinder’ has led to a recent expansion in the Foundation’s activities. On 1 February 2010, the Centre for Individuals with Congenital Alcohol Disorders (Zentrum für Menschen mit angeborenen Alkoholschäden) opened on the Virchow-Klinikum campus of the Charité, Berlin’s teaching hospital.
This new Centre focuses on the needs of children, young people and adults with Fetal Alcohol Spectrum Disorders (FASD). These health problems result from maternal alcohol consumption during pregnancy and range from mild to severe mental and physical disabilities and irreparable damage to the central nervous system. In Germany alone, around 4,000 children with FASD are born every year. Estimates suggest considerably more unreported cases.
Alcohol consumed during pregnancy constitutes the toxin with the most serious consequences for the unborn child and the most common non-genetic cause of congenital mental and physical disabilities in children. Alcohol drunk by an expectant mother enters the child’s bloodstream via the placenta. It can impair the cells of the unborn child by inhibiting cell division and damage the natural development of the body’s organs, above all, the brain.
Lifelong consequences include stunted growth, deformed genitalia, thin lips, hearing problems, narrowed or squinting eyes, difficulties in swallowing and, above all, heart defects. In addition, the damage to the brain often results in reduced intelligence, behavioural and learning difficulties and sleep problems.
Many of the impairments are discovered only after several years. These are manifested in difficulties in concentration, delays in speech development, hyperactivity and problems in social behaviour. A child may overcome some of the disorders in the course of time. Other impairments will remain throughout a person’s life.
The question whether or not a damage is caused and, if so, the question of its nature and severity, depends in part on the duration, amount and intensity of drinking during pregnancy. Particularly severe cases of FASD occur in children whose mothers have alcohol-related disorders. However, even a drink which is regarded as socially acceptable is shared with the child in the womb. Research has not yet established whether the occasional consumption of alcohol by expectant mothers is free of all risk to the unborn child. There is no scientifically proven threshold for safe drinking during pregnancy. For that reason, the Foundation for the Disabled Child advises expectant mothers to avoid alcohol at all during pregnancy.
The Centre for Individuals with Congenital Alcohol Disorders at the Charité is headed by Professor Joachim Dudenhausen and Professor Hans-Ludwig Spohr. Both Professor Dudenhausen and Professor Spohr have worked in the field of FASD for over 20 years. Until 2010, Professor Dudenhausen was director of the maternity clinics at the Charité and he is the chairman of the Foundation for the Disabled Child. Until 2005, Professor Spohr was director of the paediatric clinic at the DRK-Klinik, a hospital in Berlin’s Westend neighbourhood.
In addition to its diagnostic and counselling functions, the Centre aims at developing its prevention and research activities. For example, a new study is planned to investigate the number of women who drink and the amount of alcohol consumed during pregnancy. Educational and prevention courses for pregnant women and professionals working in the field will be established with the aim of conveying the message of FASD - it is a completely avoidable disability - and reducing the number of cases.