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Share Why it is important to assess children with congenital heart disease in Early Intervention

Silvia Díaz @madreaventura

Two months ago took place the 12th National Congress of the Spanish Society of Pediatric Cardiology and Congenital Heart Disease (SECPCC), which addressed the problem in the schooling stage faced by children between three and 18 years who suffer some type of heart disease

The conclusions obtained focused on the importance that children with heart problems hospitalized for at least one month in their first year of life, can be assessed in Early Care, with the aim of avoiding disorders or learning difficulties.

Heart disease and learning disorders or socialization

Congenital heart disease is the congenital defect with the highest incidence in Spain, which affects an average of eight out of every thousand babies born. This means 4, 000 new cases each year, to which add the more than 120, 000 young people and adults who chronically coexist with this pathology in our country.

Medical advances in recent decades have allowed that about 85 percent of children with heart problems reach the adult stage, so the concerns of affected families also extend to areas related to the quality of life of their children .

And one of these main sources of concern are the difficulties that these children face in the period of schooling, which includes both the learning process and the social relationships of the children.

A joint research conducted by nine organizations to help children with congenital heart disease in Spain, presented the results at the 12th National Congress of the Spanish Society of Pediatric Cardiology and Congenital Heart Disease (SECPCC), which was held in San Sebastian last May .

This study, promoted by the Fundación Menudos Corazones, warns of the need to assess in Early Care children with heart problems who have been hospitalized for at least one month in their first year of life .

In this way, they affirm that the risks of disorders or difficulties of learning and socialization that a high percentage of minors with this pathology can be avoided or minimized

The conclusions of the study were obtained after a survey of 525 families with children between three and 18 years of age with heart problems. Of these children, more than 70 percent had been operated on before their first birthday, and 26 percent of them had been hospitalized for more than a month.

The "first map of the learning and socialization difficulties of children with congenital heart disease" also points out that almost 27 percent of parents with children over six years of age have stated that their children have also been diagnosed with learning disorders or socialization, among which are:

  • Attention deficit disorder,
  • Attention deficit hyperactivity disorder (ADHD)
  • Dyslexia,
  • Dysgraphia,
  • Disortography,
  • Social communication disorder
  • Autism spectrum disorders

In addition, a significant percentage of parents of the survey said that, despite not yet having a diagnosis, their children with congenital heart disease also have difficulties in the areas mentioned .

"It follows that some disorders are diagnosed late and others could have been minimized or avoided if they had acted on time, in the first years of life" - says Aurora Pimentel, of Menudos Corazones, coordinator of the research.

Other challenges of the school stage

The research also yields other significant data related to the school stage of children with congenital heart disease and ages between eight and 18 years.

Of these, 29 percent have needed curricular adaptation, almost 21 percent have repeated the course, and the same percentage has passed the course but with pending subjects. In addition, 46 percent have or have had difficulty in calculus or math, and almost 40 percent in writing.

Therefore, from Menudos Corazones insist on the importance that all autonomous communities provide early care to children with congenital heart disease who have been hospitalized at least one month in their first year of life.

"This study highlights the importance of the organizations of children and young people with congenital heart disease working together, gathering experiences and obtaining results that are extremely useful for cardiologists." The value provided by patient organizations to the knowledge of the problems Every day of those affected is immense "- reflected Dr. Begoña Manso, of the SECPCC.

In recent years, attention to the newborn with congenital heart disease has greatly improved . One of the factors that has contributed to this improvement has been the advances that have taken place in the prenatal diagnosis of a large number of patients.

Once the diagnosis is made, social support and the development of channels that improve the situation of sick children and their relatives is essential. And in this sense comes into play the school stage, the proper monitoring of professionals, and the help that the child needs to avoid or treat any learning problem.

Photo | iStock

Via | Menudos Corazones

In Babies and More | What is early care and what is it used for ?, Congenital heart disease: the birth defect with the highest incidence in Spain