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Cyanotic Heart Disease research can help restructure health care, do better planning

11 July 2022 | Story Andre Damons | Photo Supplied

Prof Stephan Brown is a Principal Specialist and Head of the Division of Paediatric Cardiology in the Department of Paediatrics and Child Health in the Faculty of Health Sciences at the University of the Free State (UFS).

Paediatric heart specialists at the Universitas Academic Hospital and the University of the Free State (UFS) hope their research into the deadly Cyanotic Heart Disease amongst newborns will assist health authorities in central South Africa to restructure healthcare services and do better health-planning to save more lives.

Prof Stephen Brown, Principal Specialist and Head of the Division of Paediatric Cardiology in the Department of Paediatrics and Child Health in the Faculty of Health Sciences at the UFS, says children from poor and rural areas in central South Africa are dying of Cyanotic Heart Disease. One of the main contributors to these deaths is the distance patients have to travel to regional hospitals.

The research was done under the auspices of the Robert W M Frater Cardiovascular Research Centre in the department of cardiothoracic surgery in the UFS School of Medicine. The results are still in the preliminary stage as the final data is still being analysed. The Robert W M Frater Cardiovascular Research Centre (the Frater Centre) was established in 2015 under the leadership of Prof. Francis E Smit. This was made possible through donor funding, especially by Dr Robert W M Frater MD PhD (honoris causa, UFS), a South Africa-born New York-based cardiothoracic surgeon, researcher and innovator as infrastructure and project support by the UFS.

The vision of the Frater Centre is to be a leading cardiovascular research institution in South Africa and sub-Saharan Africa. It provides an interdisciplinary training and research platform for scientists and clinicians from different backgrounds to develop as researchers and collaborators in cardiovascular and thoracic surgery and related domains. Activities are focused on the development of African solutions for African problems.

According to Prof Brown, who is also a paediatric cardiologist at the Universitas Hospital, children with this disease present with a blueish colour because the oxygenated and desaturated blood mixes, leading to the blue discoloration. Prof Brown and his master’s degree researcher (Marius van Jaarsveld) focused on single ventricle physiologies; children who effectively have a single pumping chamber which means one of the chambers is underdeveloped or not developed at all. A normal person has two pumping chambers.

“With this study we looked over 20 years of cases. Over this period we saw 154 children. It is a retrospective study because we are fortunate to have a very extensive database dating back to 1987. One thing of concern is that we should have seen a lot more children if you look at the worldwide statistics,” says Prof Brown.

Treatment

According to him, 40 of these children never received any form of therapy for the simple reason that a lot of them presented too late while others had severe birth asphyxia when they got to the hospital.

Treatment for Cyanotic Heart Disease usually involves up to three operations before the children become pink again. “The first operation is called palliation to ensure we control the lung blood. That is usually in the first to two to six weeks after birth. The second operation is done between six months to a year of age when we do to what we call a bidirectional Glen – second-stage palliation. Also to improve general condition and take some of the volume off the heart. The last operation, called the Fontan operation, happens between six to seven years of age and that’s when they become pink,” explains Prof Brown.

Prof Brown says the results from the study compare favorably with the rest of South Africa and Africa but do not compare that well to high-income countries because they have more resources available.

They have seen children from Northern Cape, North West, some parts of the Eastern Cape and Lesotho. According to Prof Brown, once they looked closer, they discovered that the closer the patients are to the hospital, the sooner they present to hospital. The further away they are, the longer it takes them to present at a hospital with congenital cardiac facilities.

“In Mangaung we saw the kids when they were around about four days old. At Thabo Mofutsanyana district in Qwaqwa we saw them three to four days after birth. So they presented early. Lejweleputswa and Xhariep districts we saw the patients after they were one month old. In densely populated areas it is picked up early, as they are closer to the referral hospitals. The further, away from a hospital, the longer it takes to get to us. In Lesotho it takes up to six months [for them to get to us] and the Northern Cape up to two months of age,” explains Prof Brown.

This is most likely an indication that distance from the hospitals plays a major role in deaths.

How will the study help?

Though a part of the study is for epidemiological information, Prof Brown hopes that the health authorities will take stock of the findings. “These studies are important to make health authorities aware of the challenges and to assist in health planning. What can we do better for the people? We are doing clinical research. This is important because we are a mid- to low-income country with limited resources and it is important for the population we are dealing with.”

“Our prime aim is if one knows what is going on in your population you can restructure your health care accordingly. That is our ultimate aim. Get it published and talk to the authorities. Now we can scientifically prove instead of relying on perception.”

The solution

Prof Brown says this disease can potentially be prevented by doing foetal heart sonar scans. If there is a huge screening project, a large number of deaths can potentially be prevented. Maternal screening is very important. Early referrals are also a step in the right direction. “Our parents, caregivers, and nurses need to be educated. Another solution is to do a simple saturation screening monitor prior to discharge after birth. I have been advocating for this for years and hopefully, before I retire, it will become routine procedure. Obviously there will be a lot of false positives, but we can help our people by earlier recognition of cyanosis.”

• Prof Brown, who is passionate about the health of children, says a life-saving collaboration initiative between the UFS, the Mother and Child Academic Hospital (MACAH) Foundation, and the Discovery Fund started five years ago to help curb the death of young patients due to congenital heart disease, and to make services more accessible to rural communities. With this outreach initiative, Prof Brown travels to rural areas in the Free State to diagnose heart defects in babies early.

News Archive

Conference: Expanded ARV treatment

2005-03-02

VENUE: University of the Free State, Bloemfontein, South Africa
DATE: 30 March 2005 - 1 April 2005

ARV Programme as on 24Feb Download Word document
Programme Special events Download Word document

Official web site www.fshealth.gov.za/subsites/arvc

Rationale for the Conference
At the time of the planned Conference, much ground would have been covered, both in the Free State and in South Africa, in respect of the expanded public sector ARV treatment programme in respect of research, experiences in practice, training of staff, treatment of patients, lessons learned, successes and failures, etc. The time would then be quite opportune to share these in a systematic manner with other provinces and countries, as well as with the large variety of stakeholders and role players in the ARV and related domains, be they academics and researchers, policy makers and service/facility managers, the variety of caregivers, and the community organisations and affected patients.

The Conference and current research
The proposed Conference is, firstly, directly linked to the current research on the public sector roll-out of ARV treatment in the Free State conducted by several research institutions (e.g. CIET, CHSR&D, UCT Lung Institute). Secondly, the Conference could and would serve as a forum for other research groups in the country and further a field to report and share knowledge and experiences on ARV treatment and related initiatives. Lastly, the Conference will stage a golden opportunity for researchers and scientists, on the one hand, and policy makers, managers, and caregivers (as knowledge users), on the other hand, to engage in cross-disciplinary discourse on this mutual and topical theme.

Theme of Conference
Expanded ARV treatment in the Free State: sharing experiences

Focus
The focus is primarily on public sector ARV treatment in the Free State, but also initiatives/activities/perspectives of relevance to the Free State elsewhere in the country at large and further a field, as well as relevant ARV initiatives in the public, private, NGO and FBO sectors. Bear in mind, however, that ARV treatment is but part of a much more comprehensive approach to HIV and AIDS. The Conference will, therefore, not narrowly focus on the ARV treatment programme only. The broader context, other relevant dimensions, and a comprehensive approach to the challenges of HIV, AIDS and TB are of equal importance.

The purpose of the Conference
Enhance meaningful exchange, mutual understanding and collaboration among researchers, scientists, policy makers, managers and practitioners in the field of ARV treatment and related fields.

Share experiences in the various spheres of ARV treatment and related spheres (policy, management, practice, research, training, public-private-civil society sectors).

Record, reflect and report on the establishment of the ARV treatment programme in the Free State, and in within the context of the comprehensive HIV/AIDS programme.

Disseminate important research results on ARV treatment and related themes to health policy makers, managers, practitioners, communities and to the research community.

Stimulate discourse among various disciplines and various stakeholders/role players involved in ARV treatment and related programmes.

Sensitise and acquaint researchers to the requirements of policy makers, managers and practitioners in respect of ARV treatment and related fields.

Facilitate the implementation of research results in ARV treatment policy, programmes and practice.

Dissemination of Conference-related information
Information generated during the Conference could feed into policy, management and practice of ARV treatment, the training accompanying such programme, and the existing body of knowledge. After the Conference the information will be disseminated via the Internet and by scientific and popular publications.

Date and duration
Set for 30 & 31 March & 1 April 2005; to commence at 09:00 on the first day (30 March) and to end at 16:30 (1 April) the third day.

Format and scope of Conference
Alternating plenary, parallel sessions and debates focused on topical issues and interest groups. The Conference will strive to be maximally interactive and participative.

Themes and topics to cover:

Policy, management and health services/practice (various levels and contexts – clinical treatment, information, IT systems, pharmacy, laboratories, nutrition)
Research covering all relevant disciplines and diverse dimensions of ARV treatment and related themes
Training and evaluation of training
Patients, communities and civil society organisations
Public, private, NGO, FBO initiatives and partnerships

Emphasis will be on the Free State, however, with of significant involvement from other provinces, SADC countries, and countries further a field. The thrust will be to export lessons and experiences from the Free State, but also to import lessons and experiences from other provinces, countries and sectors.

Presenters
Key presenters from the Free State, other provinces, South Africa, from the private, FBO and NGO sectors, and from several other countries

Delegates
About half of the delegates will be Free State stakeholders and role players (all levels and all contexts). The other half will be role players and stakeholders in the ARV and related fields from other provinces, the national level, and other countries, as well as from the private, public and non-governmental sectors.

Focused workshops
Provision will be made for half-a-day or one-day workshop initiatives on the third day (1 April 2005).

Enquiries
For more information please contact:

Prof Dingie van Rensburg
Centre for Health Systems Research & Development
University of the Free State
PO Box 339
Bloenfontein
SOUTH AFRICA
9300

Contact:
Carin van Vuuren
Conference Organiser
Centre for Health Systems Research & Development
University of the Free State
P.O.Box 339
Bloemfontein
South Africa
9300
Tel +27 (0) 51 401 2181
Fax +27 (0) 51 4480370
Cell 0832932890
e-mail: arvconference.hum@mail.uovs.ac.za

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