The National Congenital Heart Disease Awareness Day, an anomaly in the structure or function of the heart, is remembered this Monday (12) in Brazil. According to the Ministry of Health, 1% of babies born in the country have some congenital heart disease. That means about 29,000 to 30,000 new cases a year. On Tuesday (13), the National Institute of Cardiology (INC) promotes an open-door session for patients and their families, with the aim of helping each person understand and clarify doubts about the disease. The anomaly appears during pregnancy. “The child is born with the problem; it comes from the mother’s belly and, throughout life, she will deal with the disease, in the format of the complexity of what the disease is at the origin”, the coordinator of the INC’s Adult Congenital Heart Disease and Aortic Diseases Service told Agência Brasil. , Maria Carolina Terra Cola,. The unit is a reference of the Ministry of Health in Rio de Janeiro in the treatment of children and adults with congenital heart diseases. The disease can be more or less complex, explained the doctor. The simpler it is, the greater the chance of the child having the disease treated soon, that is, in the first or second childhood, and not having any sequelae, having only normal cardiological follow-up, said Maria Carolina. When the congenital heart disease is more complex, or very complex, the child, adolescent or adult will end up having to deal with the problem for the rest of their lives and, often, return to the hospital for hospitalizations and interventions, which may be surgery or catheterization. “And experience this all your life, with greater or lesser degrees of limitation, in relation to the simple things in life, like exercising, getting pregnant,” she added. Risks According to the doctor, the specific risks related to congenital heart disease include heart infection (hemocarditis) and the need for pacemaker placement. “The patient’s life will depend on the complexity of the heart disease. It will be according to the consequences, the initial residues that the disease left in his life”. Often, young people have to put a valve in their heart that, throughout their lives, will have to be replaced more than once, in periods of ten years. The simplest diseases can even be considered cured in childhood. The patient will have medical follow-up, which can be done by the cardiologist. As for medium to high complexity heart diseases, the range of patients will need to be assisted by a specialist. Not to mention issues of adult life, such as work, education, study, possibility of becoming pregnant, need for sterilization due to the high risk of becoming pregnant, risk of endocarditis and the need for new interventions for more complex patients. Maria Carolina reported that people with congenital heart disease should practice physical activity, but according to their possibilities. “There are those for whom only walking will be allowed and others who may even be allowed for competitive sports.”The sequelae can affect heart function, heart valve function, and also in the form of arrhythmia, pulmonary arterial hypertension. The residual alterations that remain in the patient are what will determine what he can do, which is the woman who will be able to get pregnant without any problem. The life of a young or young adult with congenital heart disease will be guided by the complexity of the disease in relation to these factors. According to the doctor, these questions will be able to be customized according to the severity and what the patient has in terms of residual lesions, heart problems resulting from congenital heart disease. She pointed out that even women who have already changed the heart valve, but who have congenital heart disease of medium complexity, can get pregnant. Patients who end up progressing to heart failure, pulmonary arterial hypertension, arrhythmias, will have the contraindication, because pregnancy becomes a risk to their lives. Other alterations, however, cannot be resolved with surgery. “For these patients, we advise against pregnancy”. Female children with very complex heart disease should be made aware throughout adolescence, even before entering adulthood, about the risk they will run if they become pregnant. Statistics Congenital heart disease can be transmitted from mother or father to child. Therefore, it is important in families where the heart disease recurs, that the patient knows that they can pass it on to their children. It is not uncommon to find families with multiple alterations. The number of adults with congenital heart disease has grown continuously. A 2018 study estimated that there are 50 million adults with congenital heart disease in the world. Brazil follows the world trend. According to the World Health Organization (WHO), the incidence of congenital heart disease varies between 0.8% in high-income countries and 1.2% in low-income countries – the average value of 1% of incidence is accepted for Brazil and other countries in Latin America.In the last two decades, mortality due to congenital heart disease in children has dropped almost threefold, thanks to advances in surgical and hemodynamic techniques and increasingly early and accurate diagnoses, often made in fetuses in the womb of mothers. “This gave patients a longer survival. I have patients operated on in the 1970s.” In the beginning, they were cared for, not by specialists, but by the pediatrician, and they lived less. Maria Carolina highlighted that many congenital heart disease patients face difficulties in engaging in professional life and even in accessing basic education, higher education. Many also do not consider themselves capable. “This is one of our concerns. Many low-complexity patients approach us wanting a report for the National Institute of Social Security (INSS), and we explain that they are fine. The heart disease is cured, because he was operated on in childhood, and the sequelae are not serious. The patient can study and work.” The doctor defended the need to promote the personal and professional development of these patients, because it is better to be a productive individual, who collaborates with society and with himself, insofar as it increases his self-esteem and personal fulfillment. In more complex cases, when the patient is unable to work, reports are required for the benefit of the INSS, because he has a natural limitation. Outside the curve The doctor Maria Carolina points the case of Cintia Maia as “a point outside the curve”. Diagnosed with the disease at one month and 15 days, Cintia Maria had her first appointment at the Clementino Fraga Filho University Hospital, at the Federal University of Rio de Janeiro, she underwent her first surgery at the Hospital Quarto Centenário and continued her treatment at the UFRJ hospital. When she got pregnant and had problems, Cintia was referred to the National Institute of Cardiology. Her son, who is 11 years old, was treated for the congenital heart disease early on and today he has no problems. After the pregnancy, Cintia was weakened, with many limitations, but she had her heart valve operated on and returned to her normal life. “I study, I work, I do everything.” She admits that she feels some fatigue or tiredness, but nothing that prevents her from carrying out her activities. Cintia undergoes annual monitoring at the National Institute of Cardiology, to assess the need for valve replacement. She is a teacher and neuropsychologist.
Agência Brasil
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