Maryanne Njambi: I watched my daughter die slowly, in pain

Mobese Kashama was the picture of good health, a sprightly teen who loved going for church camps. At 15, she had just come from one that had lasted for a week with a cough that did not bother her much at first but would not go away despite the over-the-counter drugs she tried. Little did she know that that cough was the beginning of the end.

“We took action when she drastically lost weight, over 20kgs. It was so alarming,” says her mother, Maryanne Njambi. “That is when she went for a sputum test and some X-rays. They diagnosed her with tuberculosis (TB) of the lungs.”

She was put on TB drugs, which she took for six months, but the doctors said that she had relapsed and appeared to be resistant to the drugs so she was put on them for another six months. That turned out to be a big mistake.

The chest specialists she saw, who were recommended by the Government physicians who had prescribed the TB drugs after a year, said she should not have taken the drugs for more than six months.

“The more she took the drugs, the more they damaged her lungs,” she says. They found that out when it was already too late. A CT scan showed that her lungs were full of holes by then.

Mobese ended up with a case of aspergillosis that was untreatable and could only be managed. The doctors recommended a lung transplant but she had very low oxygen levels so it was not possible, and any attempt might have meant that she would have died earlier.

That relegated her to a torturous, four-year-long decline in health. She took drugs to manage the situation, from the age of 16 to 20 years every day and was in and out of school, because she always needed to be either at home or in the hospital because of breathing complications.

Coming to terms

Her mother, Maryanne shares the story with an unusually calm demeanour. Sharing her story is part of her healing process.

“We had a hard time because TB drugs were free but aspergisolsis was so expensive. If she misses a dose, it is like starting all over again. NHIF denied her cover, so they could not cover the drugs. They only covered the CT scans, X-rays, so it was draining mentally, emotionally and financially.

“That is what we went through until she took her last breath.”

Despite her pain, Mobese seemed to have come to terms with her situation.

“She kept saying that God is there. So in a way, it was like she accepted and became more peaceful. She was in pain every day. There was a day she spoke out and said, ‘All this pain in one person?’”

The treatment for aspergilosis eventually damaged her nerves, to the extent that she could not walk.

“Her nerves were dead. They killed her legs. She could not walk, she could not stand, even sitting was difficult. You could see that when she was seated she was straining and even sweating and then she would slide down the seat,” says Maryanne.

“Her spine was also damaged. It was so stressful.”

She had to endure a lot of pain because the doctors said that the painkillers were causing more damage, so she had to stop taking them and they would just manage the discomfort as best as they could, such as by using an inhaler and such for the breathing difficulties.

The nerve damage also saw her lose control of her bowls, Mobese was in diapers, an embarrassing thing for a teen to endure.

“Every time I was changing her she would tell her sister, “Get out of the room’.”

Doctors also discovered that she had diabetes, which was affecting her brain and she had to be put on insulin.

Mobese’s younger sister Faith Njuguna was there through all of it as well. Maryanne still had to be a mother to her when all this was happening.

“I used to get calls from school that she was not cooperating with other students, they would find her staring around. She was not there. Then she would confide in me that every time she was in school she was thinking about her sister.

At home, she would help me out. She is the one who used to help me carry her, wash her, voluntarily. So she used to wish that she was home helping me, but at some point, we just had to move in with my sister. “I had to balance and at the same time I had to distract her sister,” says Maryanne.

When Maryanne’s sister came in to help, Maryanne would try and find things for her younger daughter sister to do. “She does some modelling and runway, so I involved her in some commercial modelling, so I used to find some distraction somehow,” she says.

As a mother watching her daughter in pain, Maryanne was in pain as well. She did not have peace and was always in fear that she would be called about something that had happened to her daughter.

Doctors had prepared them for the inevitable eventuality of Mobese’s passing. By then, she had become restless and completely immobile. Then it happened in March 2020, when the first cases of Covid-19 were discovered in Kenya.

Maryanne was distraught, with intense feelings of grief that she cannot describe. At some point even refused to go to the funeral, but on the other hand, her daughter was no longer in pain.

“I did not cry much, because I was in acceptance after seeing her in so much pain,” she says.

She bought Mobese a white dress for the funeral, “She looked peaceful.” Maryanne tried to make sure her other daughter still felt like she had a mother.

“We had to be indoors. I had to make sure that we were doing something, mostly TikTok. I used to tell her, we are not forgetting, but we are accepting. I tried to be her strength and show her that we really have to move on,” she says.

They still feel some emptiness and are each other’s shoulder to lean on when the memories get overwhelming.

Maryanne believes that Mobese helped them get closer to God and does not blame the doctors. “I do not want to start the blame game because it is not going to bring her back. You accept because she was also in acceptance,” she says.