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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

Statement on protest at the UFS

2005-03-04

Following a protest by student and non-student organisations today, the management of the University of the Free State (UFS) would like to place the following facts on record:

1. There is a well-documented process underway to further transform the UFS. At the official opening of the UFS on 4 February 2005 , the Rector and Vice-chancellor, Prof Frederick Fourie, announced that the UFS would draft a comprehensive Transformation Plan to guide the next phase of transformation at the institution.

The UFS appeals to student formations, staff associations, trade unions and other role-players to make a constructive input into this Transformation Plan.

The UFS management has been - and always will be - willing to engage with role-players and is prepared to do so even after today’s protest.

2. There is thus no regulation or policy prescription which separates students in hostels according to race.

The reality is that students exercise their freedom of choice as to which hostel they wish to be placed in. This was agreed upon by black and white students in 1997/8.

However, the unintended consequence and practice of this hostel placement policy has been that students themselves have tended to choose to stay in hostels which have over time become black hostels and white hostels.

This is a matter of concern for the management of the UFS as such a situation does not promote interaction across language, cultural and socio-economic groupings of students.

This matter is receiving attention and an intensive consultative process, which will include students, will be launched to review this policy.

The management is convinced that such interaction will enhance the learning experience of all students and sensitise them to the reality of a multicultural South Africa and a multicultural world.

3. No student organisation has been banned from operating at any of the three campuses of the UFS.

In the past few weeks, SASCO, the Young Communist League and the ANC Youth League (ANCYL) have held meetings on all three campuses, namely the Qwaqwa campus, the Vista campus and the main campus.

There are also regular interactions between top management and the leadership of SASCO and the ANCYL on campus.

In fact, the UFS upholds the right of students and staff to associate freely and to organise themselves as they see fit.

The UFS also upholds the rights of staff and students to engage in legal and peaceful protests.

The management however remains committed to discussing issues that affect staff and students in a constructive manner and appeals to student organisations in this case to engage with management.

4. The issues of registration, fees, debt and financial aid are continually monitored, and interventions to assist students are made regularly. To assist as far as possible those academically deserving students who face financial difficulties, the UFS management has put in place a structure called the Monitoring committee that includes management and student representatives.

The purpose of the Monitoring Committee is to review the cases of individual students to determine how best they can be assisted.

This applies to the Qwaqwa campus, the Vista campus and the main campus.

It is generally the case that students who perform academically will not have any difficulty in obtaining financial assistance. However, according to the requirements of National Student Financial Scheme, students who perform poorly will have difficulty in obtaining such assistance.

5. With regard to student governance, the process to institute an inclusive Central Student Representative Council (SRC), on which all three campuses will be equitably represented, was launched in July 2004, and a preliminary constitution has just been drafted. At the same time an inclusive process to review certain elements of the constitution of the main campus SRC was initiated at the end of 2004. This process, which includes all relevant student organisations and structures, is planned to produce an outcome within the next couple of months.

6. There is no policy at the UFS that is based on racism or that discriminates on the basis of the race of students and staff.

As part of the building of a new institutional culture within the broader transformation process, the UFS management is determined to eradicate all elements of racism that may occur on its campuses, and has already instituted inclusive forums on campus to discuss the issue of values and principles for a non-racial university.

Issued by: Mr Anton Fisher
Director: Strategic Communication
Cell: 072 207 8334
Tel: (051) 401-2749
4 March 2005

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