After many tests she was diagnosed with a set of complex heart defects known as Double Outlet Right Ventricle (DORV), a congenital condition which affects one in 500000 people.
While in a normal heart the aorta connects to the left ventricle and the pulmonary artery is connected to the right ventricle, in DORV cases both arteries flow out of the right ventricle and no arteries are connected to the left ventricle, resulting in poor circulation of oxygen in the blood.
Two years after her diagnosis, and a series of operations, Thaakirah received the Nikaidoh-bex surgical procedure, the first of its kind on a child’s heart at that hospital. With the benefit of early diagnosis and continuous expert care, an opportunity not available to many in Africa, Thaakirah has managed to thrive and have a happy childhood post surgery. She is currently doing Grade R.
Thaakirah’s story speaks volumes about the importance of early diagnosis and treatment.
But now a lot more children with her condition and other congenital heart disease (CHD) from across Africa are set to benefit, thanks to a multimillion-rand grant awarded by the UK Medical Research Council (UKMRC) to UCT.
The R12-million grant will enable a multi-disciplinary research team to develop a comprehensive understanding of the nature and profile of CHD on the continent.
Ultimately the aim is to reduce premature mortality from cardiovascular disease through improved diagnosis, management and follow-up of children and adults with CHD.
Heart diseases affecting children are receiving special attention this month, as February 7-14 was Congenital Heart Disease Awareness Week. CHD is the most common birth defect globally and a major cause of heart failure and death in childhood and early adulthood in Africa.
Professor Bongani Mayosi, Dean of UCT’s Faculty of Health Sciences and principal investigator of the collaborative study, says there is little research and analysis of the patterns, causes, and effects of CHD in African populations.
Available evidence suggests that the CHD burden is substantially underestimated because of incomplete recording of poor early outcomes, particularly for more severe malformations.
“There is an urgent need for research into CHD to be conducted in Africa.”
This grant is part of the MRC’s first phase of research funding anticipated from the Global Challenges Research Fund.
Co-principal Investigator Prof Liesl Zuhlke, a paediatric cardiologist who established the Children’s Heart Disease Research Unit at Red Cross Children’s Hospital, said the latest grant would fund a north-south partnership in CHD.
Part of the project will be to build capacity and establish a centre of excellence for CHD research with a new cadre of postgraduate students engaged in genomics, imaging, and biomechanical modeling.
“The opportunity to highlight the need for further comprehensive investigation into CHD and to develop, support and consolidate research around children’s heart disease in Africa is hugely exciting,” Zuhlke said.
* To read more about Thaakirah Mathewson and other children with congenital heart disease, visit the site: Brave Little Hearts SA.