The only decoration in Julia Kaleni’s concrete RDP house in the grey township of Delft, on the outskirts of Cape Town, is a shiny gold-and-orange material butterfly, which is glued to the top of a laminated kitchen cupboard. The insect, in its sheer size and brightness, dominates the one-bedroom house.
“That butterfly reminds me to believe in hope,” says the 51-year-old grandmother while soothing her wailing grandson, Asithandile, in her arms.
Kaleni opens the door and the only window in the house for fresh air. “The doctor says that’s good,” she says. “The wind blows the germs away that make us sick.”
Asithandile’s mother, Sandy (21), gave birth to him six months ago. In the seventh month of her pregnancy she fell ill. The entire left side of her body went lame. Suddenly she was left helpless. “I couldn’t walk or wash myself. I just lay on the bed,” she says. “I couldn’t even sit on a chair by myself. I still cannot. Life has changed a lot.”
Sandy delivered her son while partially paralysed. She was petrified but says her own health was the “last thing” on her mind. The wellbeing of her unborn child was what fuelled her paranoia. Going into labour she wondered: “Will my son also be paralysed, or will God be merciful and save him from it?”
Single and disabled
Sandy had a disease she had never heard of: tuberculosis of the brain, or TB meningitis. She knew TB affected people’s lungs, but had no idea it could go further than that. The TB organisms in her body attacked her brain cells and, as a result, she had a stroke that left half of her body lame.
Today, six months later, she is cured of tuberculosis — but left with permanent damage. Sandy is confined to a wheelchair, unlikely ever to walk again or hold or feed her baby by herself. She is a single, disabled mother.
Her condition has also been life-changing for her mother. Kaleni has been forced to give up her job as a domestic worker to look after her daughter and grandchild. They now survive on government disability and child grants, a total of R1280
a month.
In the house in Delft, Asithandile’s eyes close and he finally rests his head on his grandmother’s shoulder. Kaleni pats him on the back and runs her fingers through his dark, curly hair. “I have to do everything for Sandy. If she wants to stand up, I must help. If she wants to go to bed, I must help. If my grandchild needs a mother, I must be his mommy.”
Asithandile was not spared his mother’s condition. At first the doctors thought he was fine. But three days after his birth he developed severe breathing problems and was rushed to hospital. Tygerberg Children’s Hospital specialists established that he had been born with TB and started him on treatment soon afterwards.
Born with TB
“His entire body was affected and therefore his gut was not functioning properly, so we couldn’t give him oral treatment. We had to insert a drip and give the drugs intravenously,” says Asithandile’s paediatrician, Adrie Bekker. “It’s a miracle that he’s alive. We didn’t think he was going to make it.”
Congenital TB — the condition of being born with tuberculosis — is an extremely rare condition. Before 1994 fewer than 300 cases were documented worldwide. But, particularly in South Africa, the condition is on the increase, specifically because of the high HIV-infection rates. At Tygerberg four babies were born with TB last year.
In one of Bekker’s recent studies at the Desmond Tutu TB Centre at the University of Stellenbosch, two out of every three pregnant women with TB also had HIV.
“Babies exposed to HIV in the womb, whether they end up being HIV positive or not, have compromised immune systems, which make them more susceptible to contracting infections, including those affecting the brain,” she says.
Asithandile spent six weeks in intensive care and a further four-and-a-half months on TB treatment. His mother was infected with HIV as well. The little boy was fortunate: he did not contract the HIV as well and has been cured of TB. But he was not spared other negative effects.
Early detection
Like his mother, he has been left with brain damage — in his case, however, possibly as a result of being exposed to HIV, which increased his risk of brain infections.
Half of the TB-infected mothers with whom Bekker deals only discover they have the disease after they have given birth.
“They find out they’ve got TB when their babies get sick and are tested, or when they themselves fall ill after delivery. It’s so dangerous because, even if the babies weren’t born with TB, they’re still extremely vulnerable to contracting it from their mothers after birth, as TB is an airborne disease and babies have weak immune systems,” says Bekker.
“The earlier a mom is started on TB treatment in pregnancy, the lower the chances of her infant developing TB. The problem with Sandy was that both the TB and HIV were picked up too late — only in the second last month of pregnancy.”
Sandy suspects that she contracted TB from her sister, who used to live with them. “She had TB but I didn’t realise it,” she says. “I didn’t know how dangerous it was.”
“Screening is not always done properly”
Research has shown that pregnant women are often more vulnerable to developing TB because their immune systems are generally weaker than those who are not pregnant. According to a recent study in The Lancet, TB is one of the three main causes of maternal deaths in South Africa.
Last year 150 women with confirmed or suspected TB gave birth at Tygerberg hospital. Almost none had been tested for TB in the first months of their pregnancies. Although only four babies were born with TB, many others can contract the disease from their mothers shortly after birth if they do not receive protective drugs.
“Women who attend antenatal clinics should be asked important TB screening questions so it can be determined whether they should be tested for TB. But that screening is not always done properly,” says Bekker.
About 20km from Delft, six-month-old Thabile* is breathing heavily in her cot at Brooklyn Chest Hospital in Ysterplaat, the only TB hospital in the Western Cape. She is a victim of insufficient TB screening. Her mother, while pregnant, developed a severe form of tuberculosis that takes much longer to treat and for which the medication is considerably more expensive than the TB Asithandile had. It is known as multidrug-resistant TB and requires treatment for at least 18 months. Normal TB usually takes six months to cure.
Thabile was born with multidrug-resistant TB and her sick mother, who was not diagnosed during pregnancy, died two days after her birth. Thabile has been in hospital ever since. She receives injections with dangerous side effects. The medicines can damage her kidneys and make her deaf — but they also fight the TB in her body.
Long waiting list
When doctors diagnosed Thabile, they also tested her siblings for tuberculosis and found that her two-and-a-half-year-old brother, Zolile*, also has multidrug-resistant TB too. He is lying in the cot next to her, looking blankly at the ceiling; he has brain damage.
For the next year, both will have to continue taking daily TB medication with many side effects. But Brooklyn Chest only has 65 children’s beds and a long waiting list; only the sickest can stay.
The hospital can normally only admit children for the first six months of their treatment, after which they have to continue with treatment at their local clinics. Thabile and Zolile’s father cannot take care of them by himself and will not be able to ensure that they take all their medicine every day, so they are likely to be placed with foster parents once discharged.
Multidrug-resistant TB is a man-made disease. It has developed as a result of people with normal TB not completing their treatment.
“The drugs have side effects, such as nausea, but make people feel better relatively quickly. Unlike children, who we can force to take the drugs, many adults default with their treatment, after which the TB germ develops resistance to the routine antibiotics with which we treat the condition,” says the siblings’ doctor, Marianne Willemse.
“Just the tip of the iceberg”
More than half the children admitted to Brooklyn Chest have multi-drug-resistant TB. And it’s “just the tip of the iceberg”, says Willemse. “We’re busy losing the multidrug-resistant TB battle. We see more and more of these cases because they’re not picked up in time at clinic level.”
A Stellenbosch University study, known as ZamStar, confirms this. In selected Western Cape communities researchers found more people with TB not diagnosed than people who had been diagnosed with TB and were on treatment.
“TB is often picked up too late, either because the person with TB does not realise that they should go to the clinic, or because the index of suspicion is not high enough among health-care workers. By the time that someone with TB has been diagnosed, the person has infected many others, including children, without knowing it,” says Nulda Beyers of the university’s Desmond Tutu TB Centre.
Children of five and younger are the most vulnerable to TB.
“They have undeveloped immune systems and live with their parents or caregivers, who often have TB without knowing it. The children contract TB from them by breathing in tiny infected droplets,” Willemse says.
Unfortunate realities
Good ventilation, in the form of open windows and doors, helps to prevent TB because the incoming breeze dilutes the air, decreasing the chances of infected droplets being breathed in. Unfortunately, the poorer a family the worse the ventilation is, because the number of people living in the same room or tiny house increases.
One of Willemse’s patients is a four-year-old-boy, Thabiso*, who has TB meningitis. His parents brought him to the hospital when he was already unconscious. Thabiso is cortically blind and deaf — there is nothing wrong with his eyes and ears, but the areas of his brain that interpret signals from his eyes and ears have been damaged by TB leaving him unable to see or hear. He is fed through a tube in his nose, because he cannot swallow.
Fifty percent of children in his condition die; the others live with severe brain damage.
“That’s unfortunately the reality,” says Willemse. “This little boy, who was a lively four-year-old running around with his friends before getting TB, will never be normal again. The worst part is that the brain damage might have been prevented had he been diagnosed earlier. If an adult is diagnosed with tuberculosis, all the people that person is in regular contact with should be screened for active TB, but children younger than five should also receive six months of preventative therapy against TB.”
In Delft, Kaleni prepares supper while her grandson sleeps on the only bed in the house. Sandy mutters that she wishes she could help her mother.
She turns once again to the gaudy butterfly and stares at it. “I just want to be myself again and do things for myself and my baby. It’s going to happen. I know it. You’ll see — at the end of the year I will be looking after my baby.”
*Not their real names.
Mia Malan works for the Discovery Centre for Health Journalism at Rhodes University.
Next week, part two of the series will focus on TB and health workers.
Essential information about the disease
What does TB do and how does one get it?
TB is caused by a germ called Mycobacterium tuberculosis. It mainly affects the lungs but can spread to and affect any part of the body, such as the brain, bones, joints, back, kidneys, lymph glands and liver. When someone with TB talks or coughs, tiny droplets with the TB germ are released into the air and others who breathe in these droplets can be infected. Most people can contain the infection and never get sick with TB.
However, if the infection develops into active disease, the TB germs multiply in the body and cause inflammation, mostly in the lungs, and the person coughs and feels sick. If not treated, some of the lung cells can die, forming holes in which the TB germs rapidly multiply, and the person gets sicker.
What are children’s chances of getting active TB?
- If you live in South Africa, your chances of getting TB are higher than in any other country. The three countries with the most TB cases in the world are China, India and South Africa. Of these, South Africa has the highest rate of new TB cases. In South Africa an additional 1% of the population is diagnosed with TB every year, compared with 0.07% in China and 0.18% in India.
- About half the people who breathe in the TB germ will be infected, but in 90% of infected people the TB organism will stay dormant or ‘asleep” and never develop into TB disease. Your chances of developing TB disease increase when your immune system is compromised bacause of illness or stress.
- According to the World Health Organisation, people infected with both TB and HIV are 21 to 34 times more likely to develop active TB because HIV weakens the immune system. Antiretroviral treatment reduces an HIV-infected person’s chances of developing TB disease by about half in the first year of treatment.
- Four out of 10 teenage TB patients at the Brooklyn Chest Hospital in Cape Town are also HIV infected. Some studies show that up to 60% of South Africans on TB treatment are also HIV positive.
- Smoking and TB do not go well together: smokers are more likely to be infected with TB, develop TB and eventually die of TB. Six out of 10 TB deaths are attributable to smoking.
- Almost half the children in some Western Cape primary schools are infected with the TB germ by the end of grade seven.
- Children are more susceptible to TB of the brain than adults — about one of four pediatric TB patients at Brooklyn Chest Hospital have TB of the brain, a condition that often leaves them with permanent brain damage.
Protection against TB for adults and children
It is abnormal to cough continually for longer than two weeks. If that happens to you or your children, you should get tested for both TB and HIV. Other symptoms include weight loss and night sweats.
There is only one legal TB vaccine in South Africa, called Bacille Calmette-Guérin. It is about 70% effective, but only protects small children against TB that affects parts other than the lungs.
If your child complains of a headache that does not go away, or if he or she remains listless and tired for a long time, take him or her to a clinic to get tested for TB. It is not normal for a child not to want to play, or to get constant headaches, so it could be a symptom of TB of the brain.
Open the windows in public spaces and on public transport — the breeze dilutes the air, reducing your chances of breathing in the TB germ. Ask for the windows in a minibus taxi to be opened; it is likely that someone with TB is riding along with you.
Sources: 2011 Global TB Control Report, World Health Organisation, Desmond Tutu TB Centre, University of Stellenbosch, Journal for Clinical Infectious Diseases, TB media booklet, HIV and the Media Project, Anova Health Institute, Brooklyn Chest TB Hospital