Congenital Heart Defect Awareness Week, or Heart Week, runs Feb. 7-14, 2012. It is an annual awareness effort to educate the public about congenital heart defects (CHDs) – the most common of all birth defects – which aect nearly 1 in 125 babies. Participants acknowledging this week include individuals, local support groups, national and local organizations and congenital cardiology centers around the world.
For those affected by Congenital Heart Disease, Minnesota-based Parents For Heart is a family support group and resource for sound information that empowers parents and guardians to confidently advocate for their child, and find peace of mind amongst a community of support.
“Despite the widespread impact CHDs have on families everywhere, it is seldom discussed broadly,” said Jen Muller, vice chair of Parents For Heart and mom to 5-year-old Millie, who has a CHD that required surgery when she was a young child. “We want to make sure parents and families facing life with a child who has a CHD know that there are resources out there, and a welcoming community of support.”
There are many types of CHDs that range from mild to life-threatening. Local hospitals, including Children’s Hospitals and Clinics of Minnesota and Amplatz Children’s Hospital at the University of Minnesota, boast some of the highest success rates in the nation when it comes to treating and caring for children living with CHDs. More and more, parents are discovering their child’s condition during the pregnancy. However, a large number of parents make the discovery shortly after their baby is born, leading to confusion and, at times, uncertainty about how to handle the situation.
“Your child’s medical treatment is just one variable in the equation,” said Muller. “Parental support, access to information and resources for the whole family, and just knowing there are others out there who can relate to what you’re going through, is something we really strive to provide through our organization.”
Parents For Heart holds quarterly parent meetings (with childcare often provided) that feature guest speakers on an array of topics related to CHDs. They also sponsor special events, such as a fall harvest hayride at a local apple orchard, sponsor multiple heart walks in the area throughout the year, and provide superhero capes and balloons to children who are hospitalized and recovering from surgery or other treatment for their CHDs. The non-profit organization raises operating funds through a low annual membership fee as well as its annual party/fundraiser.
“During Congenital Heart Disease Awareness Week, we hope to be able to raise awareness about this important issue so that whether you are impacted by CHD in your own family, or are wanting to be of support to others that are, you have access to information about it,” said Muller.