Congenital heart disease. Children with heart problems

Congenital heart disease. Children with heart problems

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Amaya Sáez, director of the Menudos Corazones Foundation, a foundation to help children with heart problems. Its role covers all the psychological and social aspects that may affect these families, from the moment they find out that their child suffers from heart disease. The latest medical advances for the treatment of congenital heart disease are responsible for the the life expectancy of these children has reached 85 percent.

What is a heart murmur?
It is an abnormal noise in the heart. This murmur can be functional or determined by a congenital heart defect. Just because a baby has a murmur does not mean he or she has heart disease. There are many children who, in the first hours of life, are diagnosed with a murmur and can lead a normal life. Another different thing is that this murmur leads to heart disease, something that is known when performing an electrocardiogram and other complementary tests, which can justify that there is a congenital defect for which it has to be intervened or needs other treatment. In the vast majority of cases, the heart murmur is usually functional and allows the child to lead a normal life and even play sports.

What is the difference between a murmur and a heart arrhythmia?
Cardiac arrhythmia is a change in the normal rhythm of the heart and can cause a problem in the electrical system of the heart, which is solved with a pacemaker or defibrillator. However, there are cardiac arrhythmias that do not need any treatment.

When can congenital heart disease be diagnosed in babies?
Currently, almost 50 percent of congenital heart disease cases are diagnosed in utero and the rest are diagnosed in the first hours of the newborn's life.

What signs can tell parents that their child has a heart problem?
These children tend to get more tired when they suckle from the mother's breast, sweat more than normal, or be more upset. However, it is best to consult with your pediatrician.

What are the latest medical advances in the diagnosis and treatment of congenital heart disease?
Early intrauterine diagnosis has been a great advance. In the last 20 years, much progress has also been made in pediatric cardiac surgery techniques and in the field of transplants. When congenital heart disease is so complex that it cannot be operated on, the alternative is a heart transplant. Imaging techniques to see the heart inside is another of the most prominent advances, allowing surgeons to guide themselves before, during and after surgery. Previously, the survival rate for children with congenital heart disease was around 10 percent and now it has risen to 85 percent.

What are the treatments for infants and children with congenital heart disease?
In some cases, the treatment is pharmacological, but in the majority of heart diseases the treatment is surgical. The goal is to try to make that heart look like a normal heart.

What are the expectations of the children who have been operated on?
Keep in mind that if 40 years ago, you were born with a complex heart disease, you had no solution. We understand that, currently, these operated children live and have a good quality of life. What we do not know is how his heart operated on in adulthood or old age will react because there are very few adults with heart operated in childhood right now.

What is the average waiting time for a child for a heart transplant?
It depends, of course, there are not many hearts. They come from children who died in accidents, generally, and they usually wait months and even a year. However, regarding waiting, it must be said that thanks to the artificial heart, these children can wait without risk. Connected to the machine, which performs the functions of a heart, children who previously could not wait for a transplant can now be in the hospital until the time for their intervention arrives, which has opened a new door to life expectancy of these children.

Can you play sports when you have heart disease?
Children with congenital heart disease have to play sports, an adapted type of sport. Cardiologists recommend sports practice for the integration of children with heart disease.

Should children with heart disease be overprotected?
The issue of overprotection is discussed a lot between families and our psychologists because it is necessary to achieve a balance. The child should try to lead a normal life and put heart disease in its place, without giving it more importance than it has or minimizing it. In the family, when there are other siblings, it is preferable to try that there are few differences of treatment so that the child does not feel different.

What are the self-limitations that children with heart disease should consider in their daily lives?
Children must be integrated into the school and carry out their sports and leisure activities in a normal way. In each case, it must be the cardiologist who determines what type of sport is the most appropriate. From the Foundation, we try to promote curricular adaptation programs, within sports activity, so that they do not feel discriminated against.

Marisol New.

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