Mended Little Hearts of Long Island serves local communities by educating and advocating for families of children with congenital heart defects, the most common birth defect in the country.
Approximately 25% of children born with critical congenital heart defects need surgical procedures to survive, but many families are unaware of this until after birth. Mended Little Hearts was founded in 2004 to provide national support as well as educational services for families. With more than 300 local chapters nationwide, the nonprofit also offers peer-to-peer programs on a local level.
“We try to network families as best we can but we also try to make sure that we provide an outlet for our kids so they can come together and see that ‘Hey, I’m not the only person who has to go to a special doctor for my heart’ or ‘Hey, I’m not the only kid who maybe has a scar down their chest,’” says Shannan Pearsall, lead coordinator for Mended Little Hearts of LI.
Hospitals and doctors of children in MLH’s programs work closely with the organization by participating in fundraising events and educational forums and by providing resources. Every year, the nonprofit hosts a holiday drive to collect items like toys, books and crafts for New York-Presbyterian Hospital in Manhattan. In December, donations were sent directly from its Amazon wishlist to the hospital, and hospital staff informed families about MLH’s services during toy distribution.
Oftentimes the first connection a family will have with MLH comes during a fetal diagnosis. Pearsall learned about the organization after her son, Aidan, was born without a fully functioning heart.
“If I had the connection with this organization and this network of amazing families back then, the road would’ve still been a challenging and really scary one but it would’ve been one where I felt uplifted because I would’ve had that support,” Pearsall says.
The organization’s bravery bag program supplies items to families of hospitalized children post-heart surgery. These items include basic necessities like dental products, deodorant and lotion as well as tea, food, books and info about MLH. Hospitals, local schools and other chapter coordinators normally contribute to or host fundraisers for the bravery bags.
“Creature comforts are things that make a hospitalization, whether it’s a planned stay or unexpected stay, just a little easier,” Pearsall says.
To learn more about Mended Little Hearts, visit longisland.mendedlittlehearts.net.
This story first appeared in Long Island Press.