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Shivoan: Welcome to season two of TB Talk — an audio series by the National Collaborating Centre for Infectious Diseases. I’m Shivoan Balakumar.
This is episode 2 of ‘A Community Outbreak Story,’ a 4-episode series produced in partnership with the National Collaborating Centre for Indigenous Health, and NITHA, the Northern Intertribal Health Authority. This series takes an up close and personal look at the stories behind the numbers of a 2019 TB outbreak on a small northern First Nation in Saskatchewan. We spoke to TB survivors and TB program staff from the area, over four hours away from its nearest urban centres, Saskatoon and Prince Albert, otherwise known as ‘PA.’
Last episode, we heard the story of a young man who’d become the community’s index case. This time, we hear about another TB survivor in this outbreak – a boy we’ll call ‘Eddy,’ son of ‘Emily,’ names we’ve assigned to them to keep their identities confidential.
NARRATOR: Like any youngster, Eddy loved to play in the grass and run up and down the street under the watchful eye of his young mother. A mother who worked hard to take care of her son and household, while trying to go to school to improve her future.
But it was on a cold winter’s day in early December 2018 when Emily first noticed something unusual on her son’s neck. Something she knew needed medical attention; what she couldn’t realize was how dramatically both of their lives were about to change.
Emily: TB entered my son’s life when he was four years old.
NARRATOR: Most TB infections are pulmonary — that is, they affect the lungs. But somewhere between 10 to 25 percent of cases can occur elsewhere on the body. Known as extra-pulmonary TB, these infections can be much more dangerous, especially for young children.
Emily: At first, there was like a little lump by his neck. A little lump, and then I took him in for that and at the clinic here they said it was an ear infection, so I didn’t – so they told me to not think much of it. They gave me medicine for him and then I took him back home.
And he started getting night sweats and fever, um, high fevers at night. Well, I wasn’t expecting that because usually when he has a high fever – well when he was younger he would get seizures right away. But this time it was just night sweats, high fever, night sweats really bad. Like, I had to change the sheets two times at night because they were really bad night sweats. And I was scared, like I didn’t exp – I don’t know, it was the first time experience. So I brought him back and then they made an appointment for him in PA. So on that we went to PA, then they admitted him right away saying it wasn’t an ear infection at all, that his ears were good, so they started testing him.
NARRATOR: As extra-pulmonary TB infections are a rare form of an already rare disease in Canada, and affect areas of the body not traditionally associated with TB, they are often more difficult to diagnose. Sometimes, even missed.
Emily: PA was… couldn’t find out what was wrong right away. They just kept putting him on antibiotics. We were there for five days; then they sent us home. Then we went back, he was getting worse though, night sweats and fever. So we went back and they put him on another antibiotic. Kept us in for the weekend again. And then they tried him on two antibiotics this time; none of them didn’t work.
Then they sent us home using three antibiotics. And then the lump started growing bigger and bigger. So, well, around the community, they started, people started telling us, like, “What if it’s cancer or a tumour?”, and they started scaring us. So we went back to PA and then they admitted us in for like almost two weeks; just on and off trying antibiotics.
A lot of stuff went through my mind, ‘cause there’s another little boy in the community that started off with a lump on his neck, but he found out he had cancer. And that’s why I was getting scared ‘cause what if that was like … he was so young. Yeah, I was scared. They couldn’t do much more because they kept putting him on antibiotics and he was – I don’t know, it felt like it wasn’t helping.
NARRATOR: A hospital stay far from home can be hard on most adults, let alone a 4 year old. So while safety was a priority, there was always a preference to have Eddy and Emily home whenever possible.
Emily: And he was weak, in bed, we couldn’t – he couldn’t even leave the, um, he got put in, um, in a room but two doors had to be shut. I forgot what it’s called. But he couldn’t leave the hospital room. And then on Christmas Eve, they – he was doing a little – the fever wasn’t on, but he was still like getting night sweats and Christmas Eve, they let us a pass to come home.
NARRATOR: At this point, a contact investigation for TB had just been launched; leading it, front line TB nurse Shirley Nelson and community TB worker Kelly. Just seven days into their investigation of the outbreak, they had yet to hear about Eddy; it was only by chance that their paths crossed at a very opportune time.
Shirley: Yep, there was a four-year-old boy and he was acutely ill and they weren’t aware of what the cause of his illness was. And um, it just so happened, she came into the house at the tail end of our interview of the contact investigation. She was there for some reason.
Kelly: She was waiting for her ride.
Shirley: And then I’m just like, who’s she? And then they named the grandson and this little kid living in their house and we go, ‘Let’s go test him before he goes to–’, and the taxi was outside the door. The little boy had his little jacket and, and we just, ‘We’ll test you!’ [laughing]
NARRATOR: Skin tests — which take 2 to 3 days for results to show up — confirm whether someone has developed an immune response to tuberculosis. In the case of Eddy’s test, it helped narrow down what had began as a large range of potential diagnoses.
Emily: He was doing okay at home; we kept him inside on his meds. And then on the next following appointment, he got isolated again inside the hospital for another two weeks. And then they told us that he would be having a surgery, to get a little piece out of it. The skin test.
Then the next few days, it was like really red and bubbly and then I told the nurse about that. And she – they did another – they were checking on it and – ‘cause they didn’t know what it was!
Shirley: Yeah, because we had to send a nurse from PA, TB Control, to go and do the reading. From that positive result they wanted to do further investigation with regards to TB at that time.
Emily: So they sent us to Saskatoon, then we stayed there until he had his operation. Then right after the operation they send us home a day later. We were only home for two days and then it got infected, and another one started growing, so we got sent back to Saskatoon. Two weeks, it took two weeks after the operation, then they found out it was positive for TB. Then they found the right antibiotics to give him, which took long. And it sucked being in hospital alone, ‘cause it was like six hours from here. Especially with… me being alone in the hospital with him and not having that much help.
Got out in middle of February and then they told me all about TB and the germs. And they send us home with antibiotics; told to stay inside the house, so he won’t get sick again. Then they just kept checking up on him every once in a while, since end of February, yeah.
NARRATOR: First Nations experience TB incidence rates that can be over 40 times higher than Canada’s general population. Despite this, many who live there only become familiar with the disease when it affects them personally.
Emily: No, I didn’t know about it before, but now I know. When I found out it was positive TB, a lot more doctors told me about it, told me what to go through and how long it will last. Like yeah, I felt better.
I didn’t know about it ‘til my son got it, then after that, I knew a lot of people started getting it, like how many people in the community have TB now. “Cause the way he caught it was by his uncle. So his uncle always came visiting around the house, they were close to each other, and that’s how he caught it.
A lot happened this past summer though, I’ll say that.
NARRATOR: While increasing awareness in northern communities is a priority for NITHA, for Dr. Nnamdi Ndubuka, the Authority’s Medical Officer of Health, community residents aren’t the only audience for increased TB education and awareness.
Nnamdi: You know, we are continuing to do a lot of work around creating awareness of what TB is, you know, from TB 101 type of educational approach. But we still see gaps. Not just within the community setting, but also even amongst the healthcare workers themselves. We did notice that, at the time this individual presented to the clinic, their suspicion for TB was really, really low, and possibly not even in the radar at the time, because it was not typical of TB. TB awareness shouldn’t just be focused on the community members themselves but even the healthcare workers should have the opportunity to learn more about TB, particularly those that are working in TB high incidence communities. Again, the ability for healthcare workers to really be conscious and suspect TB for individuals living within those high-incident communities would be very, very paramount in making a difference.
Shirley: Look at the little guy here. The four-year-old. He could have died from TB if – it if it wasn’t on the minds of the people down south with his positive test. The little boy had quite the reaction, blistering and that, and that’s what the physicians looked into further after that for TB.
Kelly: I don’t think TB was on their minds until we told them that we did the test on him. Yeah, I’ve never heard about TB until I started working in the program.
NARRATOR: But finding and diagnosing TB is only half the battle when it comes to an effective outbreak response. The other half is treatment. With many regimens long, arduous and complex, TB program staff put a lot of time, resources and even creativity into making sure that their clients are able to successfully complete their treatment regimens. This is particularly true for clients under the age of 5.
Emily: He was mostly crying ‘cause he felt weak. Like, he barely wanted to walk around, run around. And when he got given his medicine, he wouldn’t want to take it right away, Because of the way it tasted, he wouldn’t take it and then once we got him to take it, he would throw it all back up. So it was hard to get him at first. He took his meds everyday that – once he found out he had TB, he took those meds everyday, and he would throw them back up, throw them all out. And then they would have to give it to him again until he keeps it down. For about three months, until they finally got a little white pill to give to him; now he just takes it in a cup even (laugh). So it calms him, his stomach, so he won’t throw up. When they started putting the medicine in the pudding or in the syrup or something like that, something sweet (laugh), that’s when he would start taking it. Then once we got back to our home, then we had to somehow give him juice boxes and a treat, so he would take the medicine. He’s still on treatment, ‘til end of November.
Shirley: Our med cycle here in Saskatchewan is every 28 days. So you get 28 days’ worth of medication. And you’re filling out the medical records and you have to document each dose given or missed, and if there was any issues, or else a missed dose, you had to document that you contacted your TB Control and any empties that you have or any full packages, they needed to be counted with the RN and the TB worker and sent out to TB Control. So it’s a huge process for the med delivery. There’s lots of checks and balances. And they’re not only sending to TB Control but to Northern Intertribal too [laughing]. So it’s really, it’s really complex.
When we’re in the highest point we had to hire two extra TB workers to try and coordinate the delivery of the meds. And we had to also involve the health director in hiring the extra TB workers at the time. And we had to hire, from the community, two extra community health nurses that were willing to come and focus primarily on the TB program. They switched, back-to-back, one week on and one week off. So, there’s some continuity of care.
Kelly: When we did find the active cases, they start off with 42 doses, five times a week, before they’re moved onto the second phase, which is three times a week. So after we had to make sure every dose was given. Active cases are on treatment for six to nine months. But we do have one who will be on treatment for over a year.
Shirley: When we found out more people were going on meds, we had to find a different organization of meds. Because originally they were just in a big box, eh? So Kelly and the new nurse that was just hired at that time started organizing each of the bins. But they come up with a better system since then. [laughing]
Kelly: I got these – I asked our nurse in charge for some of his blue bins, and then I got the idea just to colour code the bins. So we sorted them.
Shirley: It was quite the undertaking. Thank goodness for Kelly’s organization skills. She has those amazing skills. So that really has helped in medication delivery. That was improved.
NARRATOR: Ten months after Eddy’s initial symptoms back in December 2018, it was clear TB had disrupted both his life and his mother’s.
Emily: I ended up quitting my job because I couldn’t take the stress well. And I couldn’t take any more leave, so I just stopped going to work and I just stayed with my boy at home, and… I didn’t like it ‘cause it scared me, ‘cause the way his neck looks.
I was going to work and he would be playing around the house. And we had visitors come around and visit, and that’s how he caught it. We don’t let no visitors in the house no more. I know that. And I barely let him go play outside because the TB doctor said that he could easily catch it again; he can get lumps again on his node? So I don’t let him play outside that much and he – now at his age he really wants to. The TB people also told me not to let him around the same people that had, has TB, because he can easily get it, so… I always keep the house clean and no visitors: not let anybody inside my house anymore and take better care of him and protect our surrounding. I know that for sure.
You just gotta surround yourself, around your babies, because they can easily catch a germ right away by people, and you won’t even know. I honestly didn’t know.
NARRATOR: After nearly a year of active TB, Eddy is now closing in on five, and, thanks to his treatment, is as lively and rambunctious as ever. It’s easy to imagine how happy he’ll be when dessert no longer comes with medicine snuck inside.
Emily: He started getting better in the past two months, I’ll say. His neck’s started getting better and that’s when we started letting him go back to school. This is his first year of nursery: last year, in Head Start he was barely in school, because he was sick off and on. It feels good. Happy he’ll be off soon. (laugh) And he drives me crazy. On my feet all the time. Yeah.
Shivoan: That was episode 2 of our 4 episode series of TB Talk, season 2 – A Community Outbreak Story, narrated by Rick Harp. On our next episode, you’ll hear the story of a young woman who lost multiple family members to TB and was then forced to make an incredibly difficult decision when she herself was infected.
We would like to thank our partners on this series, the National Collaborating Centre for Indigenous Health and the Northern Inter-tribal Health Authority. I’m Shivoan Balakumar, and thanks for listening to NCCID’s TB Talk.
Music on this podcast is ‘RemsenTAL’ and ‘Our Only Uplift’ by Blue Dot Sessions, via Creative Commons license (CC BY-NC 4.0). Learn more at https://www.sessions.blue/.
Production of this podcast has been made possible through a financial contribution from the Public Health Agency of Canada, but the views expressed here do not necessarily represent those of the Agency. The host organization of the NCCID is the University of Manitoba. Learn more at nccid.ca.