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TB&Me: "In this treatment model you participate in the treatment—you can act for yourself"

When Gulnora's grandma died of tuberculosis, her family didn't realise they could be at risk. She blogs about helping her children through a new model of treatment...

Gulnora and her two sons who have been diagnosed with extensively resistant TB

We were shocked when we heard our children were suspected of having tuberculosis (TB). My family and my sister-in-law's family live together in one household compound in Rudaki District, Tajikistan. In July 2016, our grandma died from TB.

After grandma's funeral we were contacted by a TB doctor in our area who strongly advised us to get checked for TB.

The time came for the whole family to pull together to help save our children’s lives

We agreed because we started worrying; we wanted to know if any of us had developed TB—especially the kids.

We met with the TB doctor and the MSF team at the paediatric TB hospital, and they explained about TB and how the screening of people who have been in close contact with someone who has the disease is crucial to stopping it spreading to all family members.

The results

After looking at the X-Rays they said our eldest son had signs of TB.

I felt really terrible, as I remembered my son used to spend almost all day long with his grandma at home.

When grandma’s treatment was failing the health workers told us TB was contagious and that we‘d better take measures to make sure no one else in the family became infected. I said OK, but at the time I didn’t realize how transmission worked.

The injectable drug, which is a really old one, can cause deafness, so we were pleased it was replaced by delamanid—a new drug to fight TB

I didn’t know that you can become infected by breathing in the bacteria.

Despite the terrible news we were happy for the moral support we received from the health team. The doctors explained that TB can be treated with drugs and care.

It was difficult for us to accept the diagnosis, but we decided that our child should get cured.

Starting treatment

We came to Machiton TB hospital with my son in July 2016. We were informed that the length of his stay at the hospital would depend on lab test results and his body’s response to the treatment, but that it normally takes at least two months.

It was strange to imagine spending such a long time away from home and adapting to the new environment. My son’s treatment took eight months in the hospital.

While we stayed in the hospital the health care team paid regular visits back home to check if the other kids were showing symptoms. Fortunately, none of them had.

But a year later, on the second visit to check up on the family, the doctors discovered that my sister-in-law's Gulrukhsor’s two children had developed TB. Then the time came for the whole family to pull together to help save our children’s lives.

Home treatment

Gulrukhsor and I were both concerned about staying at the hospital away from home.

Our husbands were not at home as they had both left for work, so there was nobody to look after other family members and household activities.

It was so good to stay at home with our children and we didn’t have to wait for someone to come to treat them

Listening to our concerns, the medical team introduced a Family-Directly Observed Treatment (F-DOT) model and asked if we thought we could handle that. We, both mothers, were so happy.

We accepted it without even thinking because it meant we didn’t have to be hospitalized; we didn’t have to walk two to three kilometers to the directly observed treatment center every day. It was so good to stay at home with our children and we didn’t have to wait for someone to come to treat them.

We both took training sessions from the MSF team on drugs and their administration.

We learnt to differentiate the medecines by name and which drugs were prescribed for each child. It was a responsibility and at the same time satisfying because in family directly observed treatment you participate in the treatment—you can act for yourself.

Challenges

We faced two challenges during the treatment: drug side-effects and stigma.

I remember at the beginning there were times I got nervous because one of the kids used to vomit after taking the drugs. I tried to make changes to their diet: after administering the drugs I gave bread with jam one day and juice another day.

Sometimes, I noticed the drugs and treatment in general impacted the moods of the children. One became quite nervous and shouted if asked anything. Another one had, from time to time, low concentration on school subjects and low mood.

In this treatment model you participate in the treatment—you can act for yourself

But we, as mothers, tried to engage with them. We did homework together. They played in the street with other kids and it helped to distract them.

I am glad that all three kids took treatment without injections. The injectable drug, which is a really old one, can cause deafness, so we were pleased it was replaced by delamanid—a new drug to fight TB.

Fighting stigma together

As usual, their schoolmates used to play around our household compound and one day they noticed doctors coming and bringing drugs to our children. Apparently, they told teachers and other children that we have TB. After classes our children came home crying. This happened several times.

One of the teachers wrote a letter saying that we as parents need to take our children out of school until they finish treatment. I heard the director of the school was also informed about our situation. I couldn’t sit still with this—I needed to do something.

I went to the school and met with the teacher and director and explained that our kids were on treatment, and that they were not infectious anymore. They seemed to understand, but I wasn’t sure.

I asked the medical team to help me with explaining the situation to the school staff. The doctors and nurses really supported us. They went to the school and organized a big meeting with the staff and some other parents.

The TB doctor explained about TB and how to prevent it, and also explained that our kids were not contagious anymore. After that, their attitude changed gradually. Now, our kids are doing well at school.

Nowadays, we are doing well with treatment too; we go to the health facility regularly for check-ups. In order to prevent infection we open the windows and doors for a while each morning. Two or three times a week we bring blankets out under the sunshine, because we were told that microbes will die under the sun.