Heilani and Japie Hoffman remember the moment when a doctor said there was something wrong with their newborn son's heart.
"It was traumatic for us, but we felt heartsore for him," says Heilani. "The doctors explained as much as they could, but we still felt scared and didn't know what to expect."
Thankfully, the family, who live in Alberton, west of Johannesburg, can expect the best - that their son, Dewald, will have a normal, healthy life.
Dewald was born in the early hours of August 20. By noon, doctors had diagnosed transposition, a condition in which the heart's great arteries, the pulmonary artery and aorta, are reversed.
Two days later he had open-heart surgery. Dewald went home at the weekend, and doctors expect him to make a full recovery.
Farhaan Munshi of Robertsham, south of Johannesburg, was just two weeks old in January when doctors diagnosed Fallot's Tetralogy, a condition in which the heart cannot pump enough blood to the lungs for oxygenation, causing cyanosis - a blue tinge to the skin (hence "blue baby").
His parents, Mushabel and Shakira Munshi, were terrified and imagined a lifelong struggle with heart disease. Farhaan had surgery last week and is also expected to make a full recovery.
Chanda Gaefiwe, a single mother from Botswana, only discovered that her son, Kesego, had a heart problem when he was three months old. Doctors diagnosed a "hole in the heart" - an opening in the wall separating the right and left sides of the heart.
Kesego was operated on last week and is also doing fine.
These babies are lucky. Heart defects are common in babies and are mostly easily correctable. However, most babies with heart defects don't get the help they need in South Africa and the rest of Africa because they don't have access to or can't afford facilities.
Dewald, Farhaan and Kesego had surgery at the Cardiac Institute for Africa, a new paediatric and adult cardiac centre instituted by Netcare at Sunninghill Hospital, north of Johannesburg.
Headed by cardiac surgeon Dr Robin Kinsley, the institute is unique in Africa. It offers the full spectrum of cardiac and cardio-thoracic medicine, with a special emphasis on paediatric conditions and diseases.
It is home to a pre-eminent team of specialists that includes cardio-thoracic surgeons, paediatric and adult cardiologists, cardiac anaesthesiologists, heart-lung perfusionists (who maintain circulation and viability while the heart is stopped), physiotherapists, occupational therapists and over 50 specialised nursing staff.
It's a rewarding line of work, says Kinsley. Some heart defects correct themselves, but most require some form of surgery. Virtually all heart conditions in babies can be treated successfully, with surgery or minimally invasive procedures, such as balloon dilatation (insertion of a balloon through a catheter to open a blocked valve). Antenatal (in utero) diagnosis of heart defects allows for effective corrective surgery in the first 24 hours after birth.
Collectively, the institute's doctors perform around 300 open-heart surgical procedures a year on babies. Around 30 percent are referred from elsewhere in Africa.
The numbers sound impressive, but are only a fraction of the children who need help. The specialised nature of heart operations means they don't come cheaply - they cost around R100 000. Presently, the institute can only help those on medical aid or those who have the money.
State hospitals perform the procedures for much less, but their resources are limited and their waiting lists are long - so long that doctors call them "death lists". The truth, is the longer heart defect goes undetected or untreated, the less likely the outcome will be positive. Kinsley hopes governments will help the institute provide affordable access to all.
Its training initiatives aim to impart skills and expertise to enhance the level of cardiac care, and staff aspire to practice world-class cardiac medicine and improve affordability and accessibility.
The institute is developing a comprehensive data repository on cardiac medicine for society-specific, quality-based resource management and for ongoing research. It also plans to develop innovative funding models and operate a Section 21 (not for profit) company to fund treatment for under-privileged patients.
That's because, along with congenital (present at birth) heart defects, the poor face a greater risk of acquired heart problems (that develop later in life).
Rheumatic fever, the most common cause of acquired heart disease worldwide, and the most common cause of heart failure in patients under 30, is a big problem in poor, overcrowded communities, says Meriel Bartlett, the Heart Foundation of South Africa's communications manager. It can be a result of repeated infections, that can damage the heart.
Rheumatic fever causes a host of problems, including leaking valves and an increased risk of heart failure. Patients become incapacitated and need expensive valve replacement surgery in their early 20s. They are usually referred to state hospitals where waiting lists stretch up to two years.
This is not only a burden on state coffers, says Bartlett. For many patients, it is "as good as being on death row". They are too sick to work, and many will die while waiting for medical help.
The tragedy is, says Bartlett, that if caught in time, rheumatic fever can be effectively treated with a simple penicillin injection. Penicillin is cheap to produce.
The Heart Foundation is passionate about fighting this "unnecessary curse", says Bartlett. "With funding and public champions we can change the fate of many children," she says.
What is a congenital heart defect?
Congenital means inborn or existing at birth. Congenital heart defects affect the heart's normal functions, either by obstructing blood flow to or inside the heart, or causing blood to flow through the heart abnormally. Defects range from simple to severe, enough to cause heart failure.
How many babies have it?
Around 1 percent of babies are thought to be born with a heart defect. The true incidence is not known, because many congenital heart defects are not obvious at birth and may appear weeks, months or even years later.
What causes heart defects?
In most cases the cause is unknown. A family history may play a role, but should not be interpreted to mean the parents are at fault. Conditions such as Down's Syndrome increase the risk of heart problems in babies.
Pregnant women have an increased risk of having a baby with a heart defect if they:
- have a viral infection such as German measles;
- are diabetic;
- use certain medications (doctors advise pregnant women not to take any medication unless it is absolutely essential); or
- abuse alcohol or recreational drugs.
How are heart defects treated?
Many defects are minor and may not require surgery. When surgery is necessary, many medical treatments are available to help the heart work properly.
What is the prognosis for children with heart defects?
Virtually all children with minor defects survive into adulthood. Exercise capacity may be limited, but most lead normal or close to normal lives. In severe cases, physical development may be slow, but mental development is rarely affected.
Figures on heart disease:
- In South Africa, someone has a heart attack every eight minutes.
- One in three men and one in four women will have a heart condition before the age of 60.
- The risk of heart disease in women is nine times more than the risk of breast cancer.
Heart Health Month
The Heart Foundation of South Africa is promoting lifestyle modification to keep your heart pumping well throughout your life. You may appear healthy on the outside, but heart disease is often called the silent killer because some risk factors such as blood pressure and cholesterol show no visible symptoms.
The first step to managing your health is to get tested. The next step is to adopt healthy habits - eating well, exercising and not smoking. For more information, call 021-447-4222 or check out the website at www.heartfoundation.co.za