Comprehensive Support To Families Of Kids With Congenital Heart Diseases In Spain

Project location: Spain
Project start date: June 2012 - Project end date: May 2013
Project number: 2012-012
Beneficiary: Fundación Menudos Corazones

 [2013-038 | 2014-053]

Heart malformations are the congenital defect of major incidence in Spain. For each thousand babies born, eight have a congenital cardiopathy.
Approximately 4.000 kids are born with cardiopathies each year in Spain.
78% of these babies need a first heart surgery before they are 1 year old, 70% of them, before they are 3 months old.
When a baby is born with a congenital heart disease, his/her parents feel lost, in need for information and support. They have to cope with great levels of stress and fear. Cardiac defects are usually complicated and more than often require one or several heart surgeries, lifetime medication, and precautions with regards to alimentation and physical activity. It is frequent that one parent has to abandon his/her carrier to take care of the kid. Surgeries are often done in reference centers, situated in the capital city, requiring the family, or part of it, to travel to Madrid and stay there for long periods of time, that can go up to one year in extreme cases. All these factors result in an important negative impact in the parents and siblings, on the emotional, psychological, logistics and economical levels.
Kids with heart diseases, in turn, live long hospitalizations, are deprived from a normal life and experience difficult situations. Indeed, long and irregular hospital stays, as in the case of kids with congenital heart disease, have a negative impact on their daily routine:
- Physically: limitation of their mobility, psychomotor retard.
- Emotionally: social isolation, difficulties in relationships, overprotection, difficulties at school, impact on the family dynamic.
- Psychoemotionally: difficulties to eat, to sleep, enuresis, encopresis, regression in basic behavioral patterns, guilt, anxiety, fear of death, mutism, low self-esteem, negative image of oneself..
In some cases, fortunately much less nowadays than a generation ago, families suffer the loss of a kid, and face all the difficulties of the mourning of a kid.
The Fundación Menudos Corazones works to alleviate the suffering of parents, kids and siblings, and to solve each and every of the issues related to congenital heart diseases.

Chronic disease, hospitalization and medical and surgical treatments put kids and their families in a difficult situation which can threaten their physical as well as psychological development. The "Comprehensive support to families of kids with congenital heart diseases" seeks to provide a multidisciplinary support to parents, kids and siblings, in order to facilitate their adaptation to their new situation and the comprehensive development of the kid. The project includes accommodation free of charge of the families who have to travel to Madrid to get medical attention, psychological support in the hospital and outside, both right after hospitalization and on the longer term, as well as educational and recreational activities in hospital ward and rooms for kids and parents.
The program includes 2 psychologists and one educator, as well as the renting and management of up to 9 rooms for families.

The Nando Peretti Foundation has awarded a grant for this project, which is centered on families and will provide the adequate support to up to 1.000 families throughout the year 2012. In addition, having the funds to cover the project for the whole year will allow the Fundación Menudos Corazones to dedicate resources to general awareness and fund raising in order to grow in such a way that in the future no family remains alone in front of such a situation. The Fundación Menudos Corazones is still too modest to get to the 4.000 kids born each year with heart diseases in Spain.

The Fundación Menudos Corazones was created by a group of parents of kids with congenital heart diseases in 1999 to answer unmet needs of families facing such a situation. The initial association adopted the legal form of a Foundation in 2003, and has, since its beginnings, dedicated its activities to the objective of allowing the cure, the comprehensive development and the increase in quality of life of kids and teenagers with congenital heart diseases and their families (parents and siblings). The Foundation realises the following projects, among others:
- accommodation free of charge of families who have to move temporarily to Madrid due to the medical needs of one of their kids,
- psychological support in hospital and outside,
- educational and recreational activities in hospital (in ward, rooms and paediatric ICUs),
- summer camps for kids and teenagers with heart defects,
- as well as numerous activities dedicated to informing and raising awareness about congenital heart diseases (magazine, websites, social media and platforms, events, media and PR relations, etc.)

This project received a grant also in 2013 and 2014.