Brave Little Hearts Namibia (BLH Namibia), a member of the Brave Little Hearts Africa, was founded in 2018 by Martha Shiimi Naambo, a TOF survivor and advocate, with the help of cardiologist Dr. Fenni Shidhika and her team at Windhoek Cardiac Clinic.
The organization provides an opportunity for families and congenital heart disease patients to support each other, share their experiences, give hope, provide educational information, and raise awareness of congenital heart disease.
Global ARCH speaks to Martha Shiimi Naambo:
1. What would your members say is their favourite thing about being a part of Brave Little Hearts Namibia?
Their favorite things about being part of the BLH Namibia include networking and connecting with other heart parents and patients, as they provide each other with incredible ways on how to cope in a positive way with exceptional life circumstances.
This was one of my inspirations in creating this platform, as this group helps parents and patients get all kinds of support, including information, emotional and lifelong care so they can better face the stress of caring for a congenital heart disease child or of living with a chronic heart illness.
2. What are some of the biggest challenges you face as an organization?
Adequate access to healthcare. We are blessed to have one of the best doctors and healthcare providers but we have limited facilities and resources. Our highly specialized cardiac clinic is centralized in Windhoek but most patients and families cannot afford to live in the city. Therefore they have to take time away from work and school to go for their appointments, which can disrupt their routines.
Most of our adult congenital heart disease patients struggles with stigmatization – mostly shaming and blaming when society thinks hearts patients do not take good care of their health even though most of these health challenges can’t be prevented. And I believe with more awareness and education people can show more empathy and supports towards heart patients.
3. What are some of the highlights of working with congenital heart disease families?
Hosting our first ever congenital heart disease awareness week earlier this year was a big success. We created an opportunity for both our congenital heart disease families and our healthcare providers to come together to share information and raise awareness. Our goal is for more patients to share their stories and give hope to others.
Another highlight is having the opportunity to visit patients in the hospital and giving them hope.
4. How can Global ARCH help you the most?
Firstly education and training. I would love to learn more about congenital heart disease advocacy and information that will help me better our congenital heart disease community here in Namibia. I also would like to be kept up to date with new information that I will be able to share with my members.
Currently we only have access to our Windhoek based patients, and I would love in the future for all our patients all around the country to have direct access to the information, especially those in remote areas.
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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.