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Why a Global Coalition Matters: One Mother’s Story

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February 13, 2024

Tendai Moyo, founder of Brave Little Hearts Zimbabwe, is an active member the Global ARCH Board of Directors. She joined to help raise awareness about congenital heart disease (CHD) and the devastating impact it can have on families struggling to find lifesaving medical care for their babies with CHD.

A race against time to save “Rudo”

In 2017, Tendai and her family were running out of time trying to raise the funds to send 9-month-old Rudorwashe Grace to India where surgery for her condition was available. They had managed to raise just a portion and were distraught at the thought of losing her. Their dwindling funds were used to cover the cost of her heart failure medication and oxygen to keep her alive.

Baby “Rudo” was only diagnosed at 7 months as the medical facilities in Zimbabwe lacked the necessary equipment to detect her condition earlier.

Sadly, Rudo died before the family had raised the money necessary for her surgeries.

This is just one of many hundreds of thousands of similar stories worldwide. It is a sobering fact that globally, 90% of babies with CHD die due to lack of access to a timely diagnosis and lifesaving medical treatment.

To read more about what Brave Little Hearts Zimbabwe has done to help their community click HERE.

The Global Coalition for Pediatric & Congenital Hearts – advocacy in action – one step at a time

In response to the stark inequities in lifesaving heart care care globally, Global ARCH launched the Global Coalition for Pediatric & Congenital Hearts in partnership with Children’s HeartLink. The goal is to create a collective voice to advocate for improved services. Our first step was the Call to Action, an impactful advocacy tool that has been shared with key leaders at the United States Agency for International Development (USAID), the World Bank, the United Nations General Assembly, various Ambassadors and high-ranking government officials, and leaders in the pediatric & congenital cardiac community.

We are asking our CHD community to please join the Global Coalition for Pediatric & Congenital Hearts HERE.

Learn more about Tendai and the work being done by Brave Little Hearts Zimbabwe HERE.

For more information about Global ARCH’s advocacy work, please click HERE.

Video translated into Shona.

Global ARCH

Nahimeh Jaffar 

Nahimeh Jaffar has worked as a certified Project Manager (PMP) in various fields, including Public Health, Biotech, and Pharmaceuticals, working within clinical settings such as hospitals and clinics. In addition, she worked with global communities in Africa, the Caribbean, and the Middle East, supporting various social impact projects. Ms. Jaffar has been involved in preventive health initiatives in collaboration with the Center for Disease Control (CDC, USA) and the Center for Medicare and Medicaid Services (CMS, USA).

 

Ms. Jaffar holds an MBA in Business Development from the Swiss Institute of Higher Management, Vevey, Switzerland, and a bachelor’s degree in Consumer Affairs from California State University, Northridge, USA.

Amy Verstappen, President

Amy Verstappen has been a patient advocate and health educator since 1996, when her own challenges living with a complex heart defect led her to the Adult Congenital Heart Association, where she served as president from 2001 to 2013. She has served as an advisor to the Centers for Disease Control the National Heart, Lung and Blood Institute; and the International Society for Adult Congenital Cardiac Disease, and worked with congenital heart patient and professional groups throughout the USA and the world.  Ms. Verstappen received a Masters in Education in 1990 and a Masters in Global Health in 2019.