FIRST DIAGNOSIS AND RESPONSES
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
PROCESSES LIVED BY FAMILIES OF BABIES WITH SMA
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.
- Stage Model: In this model, families' acceptance of the disease occurs gradually. Parents may feel sad, confused, reproachful, disappointed, and depressed for their children diagnosed with the disease. With this confusion of emotions, different behaviors and thoughts may also emerge. In this model, the process of adaptation to the disease usually starts with the parents' asking "what can I do" question.
- The Continuous Sadness Model: In this model, families cannot get out of the shock for a long time. Individuals' family life and their perspective on social reactions constitute a determining factor in the period of recovery from the shock. This constant state of sadness, which is described as normal by the environment, actually shows that a psychologist should be consulted. Mothers and fathers, who are constantly in distress due to their child's illness, should be shown that they can both be upset and take various steps for the future of their children and themselves.
- Personal Configuration Model: When individuals decide to bring a child into the world, they actually have many expectations. With the children diagnosed with the disease, the life plans of the families who have various plans on issues such as the future of the child, education, lifestyle, family life, are changed. The fact that their expectations will not be met and their future plans are interrupted causes families to experience intense anxiety. In such a situation, families should be involved in a cognitive restructuring process regarding their children, future and their own life styles.
- Helplessness, Powerlessness and Meaninglessness Model: In this model, the approach of the environment to a baby diagnosed with a disease and its effects on the family are more prominent. Parents care about what their environment thinks about their children who are diagnosed with the disease. If the environment is generally in a sense of helplessness, the family also imprisons itself in a feeling of helplessness. Therefore, an environmental approach to the families of babies diagnosed with SMA is important. Beyond doctor and family cooperation, support from the environment is also an important source of motivation for families.
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.
