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Congenital Heart Disease affects one in every 100 children. However, many of these children are able to
lead productive lives with varying degrees of quality, based on the type of defect they have. The issues and
treatments of dealing with these children and families are life long. In caring for families of children with heart
defects, the emotional well-being of the family and child is paramount.
It was for this reason that we established a support group called Helping Hearts Parents Support Group. The
mission of this group is to provide the families of pediatric cardiac patients with a network to support each
other and to work in conjunction with the professional guidance of a social worker and nursing staff.
Families need to be provided with emotional support and educational information to help in understanding
the disease, and help them cope with the issues that face them. Pediatric heart disease is a chronic illness
with peaks in acuteness that can occur any time throughout the child's life. For some pediatric heart patients
there are many treatment options that are available, and for others there are few. Regardless of the medical
and surgical treatment options that are available, these families need to feel empowered when making these
life-changing decisions for their children, and our group is a means of achieving this support goal.
In most cases, the stress, anger, guilt, and confusion that the family members are experiencing after the
diagnosis of their child, makes this decision-making process seem insurmountable. Our group plays a vital
role in helping newly diagnosed families understand that the emotions they are feeling are normal and okay.
Having felt these emotions on a first hand basis, our group members are in a position to know what these
families are going through, and thus we can offer suggestions and guidance that are based on actual life
experiences.
Therefore, a support group that can provide a variety of mechanisms for education and networking among
these special families is essential. Helping Hearts has provided some of these services through monthly
support groups, semi-annual family gatherings, and initially quarterly newsletters, to help these families be
better informed and connected.
It is our current goal to enhance the outreach and educational aspects of the support process, as they are
now provided in an inconsistent manner due to the limited availability of resources.
Establishment of a sense of empowerment and control during a time of significant turmoil (as when a child is
diagnosed with a heart defect,) is the ultimate goal of Helping Hearts. Helping Hearts has been operating on
a purely volunteer basis for over 10 years. While this has been an exemplary "labor of love" for a small core
of dedicated individuals, family and career obligations have severely limited the group's ability to outreach in
several key areas. In order to continue to fulfill our mission and expand our outreach, we have designed a
plan that will allow us to meet our goals in the coming months and years.
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