BENEFITING: ABAANA HEART HEALERS
Abaana Heart Healers is a nonprofit organization dedicated to treating congenital heart defects in Uganda. Congenital heart defects are the most common birth defect, occurring in approximately 1% of all children.
Heart disease is epidemic throughout the developing world. With intervention (surgery or heart catheterization), many children with heart problems have a normal life expectancy and quality of life. In 2014 survival after heart surgery in children approaches 98%. Without treatment, these children will become progressively sicker and are unlikely to survive into adulthood; many will die before 5 years of age.
Unfortunately, only 7% of the world’s population has access to corrective heart treatment that is available in developed countries; sub-Saharan Africa is the worst off. There are nearly 6 million children worldwide with potentially treatable congenital and acquired heart defects that do not have access to care including an estimated 5,000 – 6,000 children in Uganda in need of cardiac intervention in 2014. Before 2007, the only option for children in need of open-heart surgery was to go abroad; most cases at a cost that was not affordable to the family of the child.
Since 2002, with the support of many charitable organizations including his own non-profit organization, Abaana (Ugandan word for children) Heart Healers Dr. Craig Sable has led an international group of doctors, nurses, and technicians in collaboration with the team at the Uganda Heart Institute at Mulago Hospital to improve the care of children with heart disease in Uganda and develop a sustainable model of care that can change the fate of thousands of children in Africa. Our underlying premise is that no child with treatable heart disease should be left behind. The years of life saved from an open-heart procedure justifies the costs when comparing it to most other public health initiatives.
We have led sixteen medical missions to Mulago Hospital since 2003; the last eight have focused on performing open-heart surgery and cardiac catheterization at the Uganda Heart Institute. The goals of these missions have been to perform heart surgery with the Ugandan medical team, diagnose children with heart disease, facilitate treatment of these children abroad when needed, conduct collaborative research to reduce the burden of rheumatic heart disease, and, most importantly, build a sustainable cardiac surgery program in Uganda through education, donation of technology, patient care, and meetings with hospital and government officials.
Over 200 open-heart surgeries have been performed in Uganda, the first in 2007; complexity has increased every year and survival is over 98%. An additional 200 have been able to receive care abroad. Children from Kenya, Sudan, and Congo have been referred to Uganda for treatment. The Children’s team lead by surgeon Pranava Sinha performed the first open heart surgery in a brand new operating room on February 12, 2013. Over 1,000 children have been evaluated by echocardiography, dramatically improving their chances of getting treatment while improving diagnostic capabilities of local medical personnel. Over 30 open-heart surgeries have been performed by the Ugandan Heart Institute team by themselves, a critical step that first took place in 2009. Kenya and Ghana are the only other countries in sub-Saharan Africa that offer independent pediatric open-heart surgery. The first two catheterizations in Uganda were performed by Dr. Kanishka Ratnayaka in February 2012; 16 cases were performed during our 2014 mission in the new state of the art biplane catheterization laboratory. The Ugandan team is now also performing independent interventional pediatric cardiac catheterization procedures.
Congenital heart disease is not the only problem we are addressing in Uganda. Rheumatic Heart Disease (RHD) is very rare in the developed world, but remains the most important heart problem in children and young adults on the planet. RHD is caused be repeated untreated strep throat and strep skin infections that ultimately result in irreversible damage to heart valves. It is totally preventable if caught early; the prime age for prevention is between 5 and 15 years of age. Estimates of the worldwide burden of rheumatic heart disease range from 30 - 50 million people and at least 100,000 children in Uganda have RHD. There are over 250,000 deaths and 500,000 new cases per year; 1 out of 5 women with RHD who become pregnant die during pregnancy or childbirth. Vaccine research and public education campaigns are promising but echocardiography is the best way to detect early disease and allow for initiation of penicillin at a cost of pennies per year, which can prevent the progression of devastating heart disease. The World Health Organization and World Heart Federation are calling for research that can define the best way to carry out early detection programs and our work in Uganda is on the forefront of this research. To date over 10,000 children have been screened by echocardiography – over 2% of these children had findings concerning for RHD.
The Uganda Heart Institute has met many of the requirements to move forward in building a sustainable open heart surgery program. The facility and team in Uganda offer hope for the first time, that a sustainable program can be built in the most resource-poor region of the world. Our goal is to have a sustainable and independent heart surgery program within five years in Uganda. The way forward includes sponsoring missions to Uganda for the next five years and the Ugandan heart surgery and catheterization teams performing at least two procedures per week in between missions with advancing level of complexity. A telemedicine room donated by Cisco and Rotary International opened in February 2014 that will allow for enhanced support of patient care and education.
Despite our success there are still thousands of children in need of care in Uganda. Our primary motivation is always to no longer have to say no to the parents and children with heart problems we know would get fixed in North America and reduce the burden of RHD. With each child we care for, we are not only adding decades of life to a precious child, but are impacting dozens of extended family members and hundreds of neighbors in their village. Please help by supporting our by selecting the "Donate to ths Fundraiser" button to the right.
You can learn more about Abaana Heart Healers at: http://www.abaanahearthealers.org
Thanks for your help and support in changing the lives of many young children.