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What’s It Like To Be… is a regular online column in which New Zealanders from all walks of life share their stories of health & wellbeing. Here, Paulette Crowley speaks to a mother of three about the act of kindness which led to two of her children being infected with tuberculosis. The woman says the infectious disease is so stigmatised she dare not be named.
“I couldn’t believe it when I saw test results showing that my 5-year-old daughter was positive for tuberculosis. What the hell even was that? It seemed crazy to me that we could get some sort of third world disease living in New Zealand. Wasn’t it just a box you ticked on a travelling document?
But the disease didn’t stop at just one child. My youngest daughter – who was under 2 at the time – also tested positive to TB after an initial negative result. I was heartbroken. How did this happen?
It all started in 2023 with a family friend from Vietnam who came to stay with us for about five months. He wanted to come to New Zealand but was struggling to find a place, so I suggested he come to our house.
I noticed he was really skinny – he was 24 years old but looked more like he was 14. It was as if his body never grew. I teased him about it and fed him up with heaps of food. Any normal person would put on weight with the amount I gave him, but he stayed so skinny you could see his bones.
He also had a terrible cough and was cold and lethargic all the time. At the start, I just thought he might have jet lag or had caught a cold from travelling. Then I thought the coughing was because he came from a hot country and couldn’t get used to the cooler weather here.
They picked up that he had TB during his immigration application. It showed up in his x-rays. I’ve seen x-rays of a smoker’s lungs, and his lungs were like that – all cloudy. It turned out he’d had TB all of his life.
Obviously, Immigration NZ made him go back to Vietnam. I felt so much guilt that I’d exposed my daughters to this disease, even though I had no way of knowing about it. I racked my brains about how they caught it and how I might have stopped it. I am a clean freak, so everything was always spotless.
But we shared a bathroom with our family friend and obviously the TB was in the air space. I think the reason my son didn’t catch it was because he spent all his time outside, playing basketball. I don’t know why I didn’t catch it. Maybe it’s because I was older and had been exposed to more bugs than my girls, and had a stronger immune system?
But I couldn’t dwell on it because we needed to get them treated. That’s when the real nightmare started. It turned out that my older daughter’s TB was latent [infected with the disease but not active] and my younger one had an active form of the disease.
Though neither of them had symptoms, they needed to be treated with antibiotics straight away. The tablets tasted disgusting and were huge - like an adult’s vitamin pill. Try to get three or four of those into a toddler every day.
At first, we had to follow the public health protocol to wait for a nurse to come to our house and supervise the treatment. But we had to wait around for them to fit us in their schedule and it was impossible. As a solo mum working in a stressful job, I just couldn’t deal with that. After begging them to let me give the medication myself, they eventually said yes.
My older daughter’s treatment lasted three months and was relatively straightforward but the course for my little one was 10 months long. She absolutely hated taking the pills and sometimes used to throw up or would do things like lock herself in a cupboard so she didn’t have to take them. I’d only give her a percentage of a dose and hide it in some chocolate. If she threw up, then I’d be able to calculate how much medicine she still needed. After about seven months of giving her about 95% of the medicine she needed, I was relieved when she was given the all-clear by a specialist doctor.
Even though the treatment was successful, the TB can come back if the immune system gets stressed. The girls have to be tested every year or two to see if they’re still in the clear. The implications of not getting treated are awful. From my understanding, my family friend is being treated for his TB back in Vietnam but even with that, he will probably live only for about another 10 years. TB just strips everything from you.
I am a strong, resilient woman but TB nearly broke me. We have to live in a very different way now. I work from home to minimise my kids getting tired from long hours at school and afterschool care, which could make them more prone to getting sick. There’s always a chance it could come back.
I am very protective of my daughters and don’t tell anyone about what we’ve been through. People are so judgmental. But they should be aware that this could happen to anyone – TB doesn’t discriminate, and we should all be more aware of the risks of getting it.”
Monday was World Tuberculosis Day. According to the World Health Organization (WHO), TB is the world’s deadliest infectious disease with, in 2022, 10.6 million new cases and about 1.3 million deaths attributed to it. It is one of the most common notifiable diseases in New Zealand with about 300 cases diagnosed each year. It usually affects the lungs and spreads through coughing, although it can damage other parts of the body. It can also cause meningitis. The BCG vaccine is available for children under 5 who have been exposed to TB by either living with someone who has TB, or a history of it, or has a household member who has lived in a country with a high rate of TB.
