Life is a process full of crises and balancing of these crises. Every individual may face various crises at some point in his life. Among these crises, those related to health are the ones that wear individuals down the most. Especially pediatric diseases affect both parents and children physically and psychologically. Loose Baby Syndrome as known in Turkey, ie SMA, Spinal Muscular Atrophy disease is a disease that deprives the right to life which is the most fundamental right of the individual.
Studies reveal that SMA disease and related infant deaths have increased recently. This disease, which is encountered in childhood and adolescence starting from infancy, drags families into deep sadness and despair due to the fact that its treatment is not brought to our country. In addition to the difficulty of accepting the disease, the inability to access the treatments applied for the disease causes great despair for the families. Because the fact that their babies, who are expected for 9 months with good hopes, are away from the dream of “healthy baby”, affects the acceptance of the disease even more negatively.
Each individual's reaction to the sadness is different. From the moment the disease is diagnosed, a different life begins for both the individual and his family. Adapting to this new lifestyle, doing what needs to be done effectively, and most importantly, being able to stand strong psychologically, require different periods and stages for each individual. Families experience a confusion when the disease is diagnosed. One of the primary reactions that arises is denial. Families cannot place the thought of being sick on their babies, whom they expect to meet with great hopes. Along with denial, the parents feel guilty. Parents who think their baby is sick due to their own mistakes or genetic makeup, may feel anger towards themselves or their partners. At the same time, parents may resist the treatment of their babies and experience depression during the denial process.
Reactions to the illness also vary according to personality structures. While some people think that what they experienced is a test or a punishment, some people think that they deserve what they go through. A person's self-worthlessness may cause him to consider the disease negatively and refuse treatment. These people should be provided with psychological support that gives confidence and encouragement. Families who learn that their babies are sick should be provided with psychological support according to their personality structures and their acceptance of the disease should be controlled by a specialist. With psychological support, explanatory information given by the doctor and family support, the care and treatment process of the baby can be continued positively.
PSYCHOLOGIST GONCA BAĞLAR
After the first reactions such as shock and denial after the diagnosis of the disease, the adaptation process begins. The processes of adaptation of families according to their life styles, personality structures and social environments they are in, also differ from each other.
As with any disease, reactions occurring in SMA are different from each other. The important thing is to ensure that babies are properly cared for with the right information and at the same time to keep the psychology of family members strong during the difficult process they go through. At this point, doctor and family cooperation matters. At the same time, the support from the environment will help families get through this process a bit more easily.