Human Interest

Down syndrome non-profit is mending hearts around the world

Down syndrome

Approximately half of all children born with Down syndrome have a congenital heart defect (CHD). For children in the United States, this can often be corrected through surgery and medical intervention. Yet for children around the world, it’s a much more dire circumstance — which is where Hearts of Joy comes in.

The National Down Syndrome Society (NDSS) reports that treatment for a heart defect is most effective when performed before six months of age, preventing further lung damage and ensuring the child can have a long and healthy life. Yet children in developing countries often lack resources to get these life-saving surgeries. Lauren Costabile, the founder of Hearts of Joy, realized she needed to do something to help when she was traveling internationally.

“I have over 13 years of experience working with children with special needs and have always been a fierce advocate for those with Down syndrome in particular,” she said in an interview with Live Action News. “I began volunteering at camps and on mission trips to developing countries, and I was always very curious to see how people with Down syndrome are treated in other parts of the world and how they are perceived by the culture. I traveled to Uganda, East Africa in 2017, and I could not unsee what I experienced there.”

While in the United States there is a significant abortion rate for babies diagnosed prenatally with Down syndrome, those that survive pregnancy are often able to have a long and happy life. This wasn’t the case in Uganda.

 

“I witnessed how individuals with Down syndrome were shunned by society, disregarded and seen as a burden,” Costabile said. “They are not seen as valuable and due to poverty and lack of resources, they are not given access to proper medical care. I was deeply saddened that these children were not seen as the gift that they truly are. What struck me the most was that, not only were these children misunderstood, but they were needlessly dying because they were not getting the most basic and necessary medical care, therefore cutting their lives short.”

Costabile felt she needed to do something, and Hearts of Joy was born. The non-profit provides funding for cardiac surgery and partners with doctors and hospitals around the world so children with Down syndrome can receive the care they need — and deserve.

Currently, Hearts of Joy is serving families in India, the Philippines, Uganda, Mexico, and the United States. Since 2019, they have helped mend the hearts of 35 children with Down syndrome. Many of the parents of these children either don’t know how or are unable to give their children the care they need.

READ: Beauty of Down syndrome displayed in incredible new art exhibit

“Due to poverty, lack of resources and education in developing countries, children with Down syndrome are not given the same opportunities or access to a heart scan, let alone open heart surgery,” Costabile explained. “Some families are unaware that their child has Down syndrome and are not educated on the likelihood of their child having a heart defect. Most families are living in extreme poverty and simply cannot afford the surgery to repair the hole. As a result, these children are dying because they are not getting the most basic medical treatment. This is incredibly preventable and that is where we feel called to step in and help.”

In addition to helping provide medical care, Hearts of Joy also provides the necessary education to change hearts and minds around the world.

 

“We are deeply committed to educating communities about Down syndrome and the heart defect so we can catch it as early as possible, correct the defect and enable the child to live a happy and healthy life,” Costabile said. “We firmly believe that no matter what country you are born in or what your life circumstance is, every child deserves an equal chance at a happy and healthy life and we will never stop fighting to make that possible.”

This includes in the United States, where women have access to life-saving medical care but often need compassionate, pro-life care after receiving a diagnosis, especially during pregnancy.

“We counsel women who get the prenatal diagnosis of Down syndrome and a heart defect and walk with them to support them through pregnancy,” Costabile said. “We throw baby showers and help them to understand and appreciate the child growing in their womb. We connect them with a hospital and cardiac team for the heart surgery as well as point them to resources and connect them with a community of other families of children with Down syndrome.”

Costabile believes it is her mission to change how the world sees people with Down syndrome. “People with Down syndrome have inherent dignity, purpose and value just like anyone else,” she said. “They are a gift to our world and have something very beautiful to offer.”

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