Ruth Ngwaro, an advocate for patients with heart disease, receiving a certificate from the Noncommunicable Disease Alliance of Kenya

Born with a congenital heart defect, Ruth Ngwaro, now 31, has had four open heart surgeries since the age of 3. Her most recent operation was on World Heart Day (September 29), 2020. At the age of 6 she became an ambassador for children like her. She recited poems at various events to increase awareness about congenital heart disease (CHD) and heart health. In Kenya, her country of birth, she became known for her continuous advocacy work at nonprofit organizations, resulting in partnerships with local governments and the private sector as well as supporting people living with heart disease. She has a degree in microbiology and now lives in Boston and works as a personal care assistant. 

Can you share your story of your diagnosis and treatment for congenital heart disease? 

I was diagnosed with congenital heart disease (CHD) at 3 months. Then at 3 years old, I had the first of two life-changing surgeries sponsored by an organization dedicated to helping children like me. Since CHD is a life-long condition, I required a third operation, beyond what my family could afford. I was lucky to get the support I needed and had an operation in 2001 at Nairobi Hospital. I had my fourth surgery in late September 2020 at Boston Children’s Hospital and am currently recovering at home.

What did you accomplish when advocating for congenital heart disease patients and how did you accomplish it?

I became a youth advocate in Kenya on noncommunicable diseases (NCDs), which include heart disease. With the National Council of Churches of Kenya, we achieved the inclusion of NCDs in the Nairobi County government budget. We also led educational meetings and civic education sessions on the right to health, by raising awareness and mobilizing communities. And we advocated for youth with government officials and partners.

Ruth participating in World Heart Day

Then, as co-founder, chairperson, administrative director and adviser to Kenya Mended Hearts Patients Association, I advocated for patients with congenital and rheumatic heart disease. We increased the membership to over 200 people by mobilizing communities around the importance of life-long management of heart disease.

Kenya Mended Hearts Parents Association partnered with the Ministry of Health Division of Noncommunicable Disease and professional alliances. Our organization advocated for the inclusion of affordable hospitals providing  quality services with our National Hospitals Insurance Funds. We also provided psychosocial support for people with heart disease, mainly through the WhatsApp group, home visits and one-on-one phone calls. We secured sponsorships from the private sector and acquired oximeters and oxygen concentrators for our members. The funding also supported World Heart Day awareness and paid for food donations to members during COVID-19 lockdown.

Additionally, as coordinator and assistant secretary of the NCD Alliance of Kenya, I led the counseling for people living with noncommunicable diseases and increased awareness of NCDs in the communities.

What is your connection to Children’s HeartLink?

When I was 6, I became an ambassador for Heart to Heart Foundation, which received some of their support from Children’s HeartLink at that time. For instance, I would recite poems on CHD awareness whenever a representative from your organization came to visit, and at gala dinners and heart walks. When I had surgery at Nairobi Hospital in 2001, Children’s HeartLink supported the program there.