Paediatric Cardiology Outreach Programme

The WHO African Region accounts for the highest infant mortality rate (51/1000 live births) and is about six times higher than that of the WHO European Region (8/1000 live births). The American Heart Association reported in 2013 that cardiovascular defects were the most common cause of infant mortality resulting from congenital disabilities, and almost 1 in 4 infants who died of a congenital disability had a heart anomaly. South Africa has failed to reduce the infant mortality rate and reach the Millennium Development Goals. The estimated incidence of congenital heart disease (CHD) is 8-12/1000 live births, resulting in 11 000 children born annually in South Africa and 4500 requiring surgical or percutaneous intervention. With enhanced screening programs, early identification and advances in cardiothoracic surgery, survival rates of newborns with CHD have been steadily improving. This enabled the majority of these patients to reach adulthood with improved quality of life. Early diagnosis and treatment improved long-term survival and quality of life. Many of these patients will present with severe cardiac lesions and require intervention within the first year of life.

The Department of Paediatric Cardiology at Universitas Hospital is the only dedicated referral unit for all children with congenital and acquired cardiac disease in central South Africa. With an estimated population of 7 million people, many children are misdiagnosed or referred at an advanced disease stage. Factors contributing to this problem include poor referral and primary health systems, including transport problems. Peripheral hospitals and clinics are understaffed and serviced by junior doctors. Neonates are often incorrectly diagnosed with "respiratory" disease and never reach our cardiology clinics. According to our statistics and populations base numbers, many patients get lost due to misdiagnosis and inadequate follow-up. 

Echocardiography is essential to deliver a comprehensive paediatric cardiology service. All children have the right to basic medical care. CHD is the most prevalent congenital disability and is commonly misdiagnosed.

Echocardiographic Services

Echocardiography is used to confirm a definite cardiac diagnosis, monitor disease progression and follow up. With advanced echocardiography, complex lesions are diagnosed, and early treatment programs are followed to ensure the best possible outcomes.

CHANGING THE STATUS QUO with OUR NEW CARDIAC ULTRASOUND

The aim is to deliver comprehensive paediatric cardiology services to all children in central South Africa (Free State, Northern Cape provinces and Lesotho). The outreach services include early diagnosis and treatment programmes, teaching and training opportunities for junior doctors, pre and post-graduate medical students, clinical technologists and nursing staff.

This includes outreach initiatives by three dedicated paediatric cardiologists to identify these early cardiac abnormalities, especially in rural areas. This will address unnecessary premature deaths of children in our region. 

We successfully applied (through the MACAH Foundation) to the Discovery Fund for sophisticated and portable diagnostic equipment (worth R750 000) to accomplish this. Our rural outreach programme with the dedicated portable ultrasound system increases diagnosis rates amongst pediatric patients. It also improves the teaching and training opportunities for a spectrum of healthcare workers in rural hospitals and clinics.

Statistics since the GE machine became available at the end of 2020

Since we received the GE Sonar machine, we continued and expanded our outreach programme to children with congenital cardiac disease in the following areas:

• Bongani Hospital (Welkom)
• Manapo Hospital (Qwaqwa)
• Dihlabeng Hospital (Bethlehem)
• Pelonomi Hospital (Bloemfontein)

The first three clinics are done on a three-monthly basis where one of the consultants (Prof Brown or Dr Buys) will visit the facility. During these visits, patients will be examined, an echocardiogram will be performed, and if required, the patient will be transferred to Bloemfontein for further management.

We are very thankful for Discovery and the MACAH Foundation which made this possible.

Teaching and training

The Pelonomi Hospital outreach programme was started at the end of 2020, and the clinical technologists will visit the neonatal and paediatric ICU’s twice a week and a general clinic for inpatients once a week.

Since the machine became available, we have seen 537 patients, of which many either had an interventional catheterization or corrective cardiac surgery.

The availability of this machine made it possible to serve these patients and render a service that was previously not available.

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Cancer patients

Currently, between 800 and 1000 children are diagnosed with cancer in South Africa every year. Coping with cancer diagnosis and treatment is different for every child and the child’s parents/caregivers.

Children often need to be in the hospital for treatment soon after they are diagnosed. They also spend time at the hospital for investigations and surgeries or to manage side effects. Coping with hospital stays, whether long or short, can be challenging for all family members, especially if the hospital is far from home.

Being in the hospital can be scary for both the children and their parents. It’s a whole new world, with none of the comfort and familiarity of home. It’s no wonder some children or parents feel out of control or helpless.

Parents know what works best for their children and can help their children cope with this life-threatening diagnosis and assist the health care team in creating a plan for helping them.  

This not only includes shared decision-making regarding their children’s treatment but also informing the healthcare team about particular fears their child has.  This includes things such as fear of the needles, the dark or loud noises, words their child uses to name body parts, essential objects, such as a special toy or stuffed animal or any special needs their children may have and very importantly, the best ways to get the child to cooperate.

Other primary reasons why parents need to stay with their children in hospital:

• Children tend to feel safer and more at ease when parents are part of their treatment and care in the hospital. It also gives the parents and children a feeling of control.
• Children of any age will feel more comfortable if their parents are around, and they try to create a sense of everyday life in the busy, noisy hospital. Feeling that some things stay the same when so many other things are changing is comforting for children of all ages.
• Parents can help by talking to their children in age-appropriate ways about what is happening and repeating those explanations often.
  

Dr Jan du Plessis and Dr M Jonas with a  patient

• While in the hospital, parents can talk with nurses, social workers, and other parents of children with cancer about their emotions and ways to cope. Children will cope better if their parents are getting enough support.
• Being well-rested make a big difference in how parents/caregivers are able to cope. Getting a good night’s sleep can be pretty hard when dealing with a cancer diagnosis.
• Therefore, parents need to have a comfortable and cosy space to sleep next to their sick child.
• When parents/caregivers and their children are eating well, it will make it easier for them to get through treatment and recover after treatment.

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Kids Diabetes Annual Camp


Playing games

Contact our department for more information.

The aim of the camp:

• Let children meet other children with diabetes, so they realize they are not alone. Some children are the only ones with diabetes in their school. It is often challenging to adjust to the strict glucose testing and insulin injecting times before all meals.
• Start training camp group leaders for future camps from among the children with diabetes and look out for motivated future leaders.
• Allow group leaders (most of them teenagers), who themselves have diabetes, to be an example and give some motivation to the children.
• Teach children basic facts about diabetes for them to participate actively in the management of their diabetes. What we teach:
  • Why to test blood glucose regularly
  • How to inject smartly
  • How to recognize symptoms of low and high blood sugar levels
  • How to react to these symptoms
  • How to cope with sick days and sport
  • What HbA1C means.
• Give these special children a fun-filled weekend with newly made friends. We have had music and dancing sessions, a game drive, a magician’s show (we teach that practice makes you smarter), painting of T-shirts and lots of soccer and games.
  
• The Kids Diabetes Camp has become part of the 4^th year dietetics undergraduate students’ syllabus. The students plan the mealtimes, cook the food, calculate the carbohydrate counts for each item, and assist them with their food choices. They also observe the children testing their glucose levels and deciding how much insulin to inject. Students from the 3^rd year of dietetics studies also have a role: They plan and prepare the special final lunch on Sunday.

Teaching them how to be resilient


We all can do art…

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