Comprehensive Support for Families with Kids with Congenital Heart Diseases in Spain, Years 2018-2021

Project location: SPAIN, Madrid
Project start date: July 2018 - Project end date: June 2021
Project number: 2018-021
Beneficiary: FundaciĆ³n Menudos Corazones

A congenital heart defect is a malformation of the heart or large blood vessels with a genetic origin (it is transmitted in the genes) and so is present in the fetus and in newborns. Some congenital heart defects show themselves clinically at later ages (months or years later). The children are born with a heart which lacks a part or has a part incomplete or has holes in the walls between its chambers or they are narrow or its valves leak or the blood vessels are narrow. There are many types of congenital heart defects, from those which produce a mild risk to the child’s health to those of greater risk which need immediate surgery.
Heart defects are the most common congenital pathology in Spain, affecting eight in every thousand children born, which means 4,000 new cases each year. The majority of these heart defects is mild and only requires periodic heart checkups. Other heart defects need therapeutic interventions by means of catheterization or surgery. The most severe heart defects need successive operations accompanied by long periods in hospital, as well as regular checkups, which continue in some cases until those affected are adults. We do not yet know what causes congenital heart defects, although there are risk factors such as severe illnesses or consumption of drugs during pregnancy, family histories, and chromosomal alterations in the child or the parents’ ages.

Every project of Menudos Corazones aims to improve in quality of life of children with congenital heart defects. 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.

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 nutrition 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.

The project address the problem providing families with two full-time psychologists, one external psychological advisor, one educator, and one administrator of free accommodation, as well as up to 12 rooms free of charge for families (hotels and apartments) who have to travel to Madrid to get medical attention.

Operational procedures and methodology involves: management of requests for housing (sign-up lists, waiting lists, information to families of conditions…), management of keys, household items, printed rules, feedback tests at the checking-out, etc. Inquires about families’ socio-psychological needs in order to get in touch with the psychological, if needed. Weekly phone calls to follow-up of the situation of families and support them in whatever it’s possible. If circumstances or special needs are detected the contact is more often. Constant communication between the person in charge of housing and the psycho-educational department working in hospitals in order to keep update the situation of children and parents. Weekly monitoring to keep healthy and nice the apartments (arrange cleaning, housekeeping, repairing, etc) and to solve any little problem.

Psychological support in hospitals, as well as coordination of educational activities, involves: getting in touch every week with the nursing staff at each hospital to know about new patients and follow-ups, individual meetings with parents to offer information or specific support, arrangements of activities for children (at private rooms or community rooms). Psychological support outside the hospital involves: phone calls to families after surgery to follow-up, attending phone calls for information, personal meeting at the office with parents and/or children and teenagers, coordination of the grief support group which meets monthly, update of the grief support group online forum, meetings of psychologists with the external advisor for long-terms planning and feedback.
Data from accommodation and psychological attention and educational activities are recollected monthly.

The Nando and Elsa Peretti Foundation, Delegació a Catalunya awarded a grant to support approximately 3.000 families with free accommodation and psychological attention, besides to dedicate resources to general awareness and fundraising in order to grow in such a way that in the future no family remains alone facing a difficult emotional and socio-economical situation. In Spain every year 4.000 newborns have a congenital heart defect (8 out of every thousand babies born alive) and that approximately 78% of them will need heart surgery before their first year of age and 70% within their first three months: a constant support through the years will be needed to give attention to new families which face every year a child’s diagnosis of congenital heart defect.

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