If there is one thing we want our children to learn, it’s to be independent. Following that example, Mended Little Hearts (MLH) is undergoing changes to become more independent. Since its inception in 2004, MLH has followed the tried and true, 60-plus-year model of Mended Hearts as its parent organization. Today, the program has expanded so much that it’s time for MLH to grow up and become its own entity — one that best serves the needs of a special subset of the heart disease population, families with children who have congenital heart disease.
From September 2013 to May 2014, MLH worked with Accenture Federal Services, a global management consulting, technology services and outsourcing company, to define a new mission and create ways to better serve families touched by congenital heart defects (CHDs) and heart disease.
“I believe that Mended Little Hearts is preparing for a wonderful future,” said Andrea Baer, Vice President of Mended Little Hearts, and Mended Little Hearts National Committee Chair. “MLH is growing rapidly, which is a good problem to have. We are currently working to maintain and improve the quality of the program as we grow.
“We are restructuring internally with staff and volunteers in order to address the growing needs of the organization now and in the future,” she added. “We are preparing our new strategic plan and are currently working to diversify our partnerships with organizations and corporations in order to work toward our strategic goals.”
Baer says that working with Accenture was a wonderful experience. “I am grateful that MLH had the ability to work with such an amazing company to help us design a structure that would support the needs of our local groups now and in the future,” she says. “Their volunteers were engaged and worked well at trying to understand our organization to help us grow.”
Baer became involved with Mended Little Hearts after the birth of her third son, who was born with a CHD. A friend, who was an MLH member, reached out and supported her during the family’s crisis. “We were alone and afraid and I wanted to make sure that other families in our area did not have to walk this journey alone,” she says. “My husband and I founded our local group [in southwestern Pennsylvania] in 2009 with this mission in mind.” She was elected Vice President of Mended Little Hearts in June 2013.
With the many changes already under way at MLH, including the new look and feel and the services provided, MLH is now reaching more families. Baer said she is looking forward to a promising future for Mended Little Hearts. “This is an exciting time for our organization. We have amazing volunteers across the country in our local groups, and we will be focusing on procedures to assure our standard of excellence as we grow,” she said. “Mended Hearts’ new independence will allow for the freedom of growth, but all growth comes with obstacles. Our goal is to plan for those obstacles and be prepared to establish new relationships and programs that support our mission without boundaries.”
Megan Setzer, National Director for Mended Little Hearts, agreed. “Over the last couple years, MLH has experienced rapid growth while continuing to function with limited resources,” she said. “Moving forward, I see MLH as self-sustaining with a structure that may look different than the traditional Mended Hearts structure, but that best supports the children and families we serve.”
Part of that, she added, will include more consistent branding; a clearer organizational structure; training, support, guidelines and oversight for group leaders; and quality support and resources for families affected by CHD. “My hope is that as MLH continues to grow, our organization will be a leading resource for families receiving a CHD diagnosis.”
Setzer’s youngest son was diagnosed prenatally with hypoplastic left heart syndrome (HLHS) in fall 2008. “When our son was born at a children’s hospital a few hours from our home, we had a care bag from MLH of Central Virginia waiting for us at the nurses’ station,” she said. “This gesture helped us feel less alone.”
With MLH’s restructuring, they’ll be better equipped to provide that same support for other families. “For 10 years, MLH has followed Mended Hearts’ wonderful example, but some of those don’t work as well for our different population of members and leaders,” said Setzer. “As MLH becomes more independent, the organization will be able to seek different types of funding sources that may align more closely with our organizational goals. For example, there is increasing evidence that suggests children with CHDs would benefit from neurodevelopmental consultations at various life stages. In that sense, Mended Little Hearts could seek collaborative partnerships that could benefit both researchers and CHD families.”
As Mended Little Hearts and Mended Hearts move forward into their new era of independence, Baer’s wish list for MLH would include funding to enable MLH to reach all CHD families with its Bravery Bag and Little Heart Guide programs. “I believe those programs are essential to our mission of supporting families,” she said. “A diverse funding portfolio is needed to build a strong infrastructure to staff and support these programs as we continue to grow.”
Setzer said she would like to see MLH become a nationally recognized name as a leading CHD organization. “I’d like to grow and strengthen our partnerships with children’s hospitals and CHD and other healthcare organizations,” she said, “so that we can continue to stay up-to-date with information that will allow us to empower families to make decisions for their loved ones.”