Positivity

At the training weekend back in September, I remember being told that we would have our ‘CWB moment’. I kept thinking I had experienced mine, for example in Lira, playing an impromptu game of cricket with teammates on a field beside the hotel. Inquisitive children including some street kids almost immediately wanted to join in. Encouraging them to stop inhaling drugs long enough to participate and teaching them how to bat and bowl ensured that much fun was had by all. Also meeting a 22-year-old Sudanese refugee called Martin during the same game. As he was wearing a Paris Saint Germain shirt, we started playing and talking all things football. We then got onto a more personal conversation and I found out he was studying engineering at a nearby college. He had never played cricket before but had been recently watching the ICC World Cup Qualifiers. He fled from Sudan in 2017 alongside his mother and brother. Unfortunately his father had died in Sudan and his sister was still there as they did not have the funds to bring her too. He lives in the refugee camp around 150km from Lira and is a boarder at his college during term time. His mother works as a farmer and sells maize. She struggles to pay his college fees of around $450 per year and is unable to afford an education for his brother which Martin feels extremely guilty about. His aim is to get an apprenticeship as a mechanic and be able to provide for his family and pay his mother back. He spoke of challenges faced as a young man his age in Uganda today. He described immense peer pressure to do ‘bad things’ including drugs and to be in a gang. Martin also informed me about issues regarding domestic violence leading to children often being raised by a single parent. We continued to cover a wide range of topics during our 30 minute chat whilst cricket was being played. He seemed a quietly spoken but determined and inwardly confident young man. One day when he was walking home from school in Sudan, he and his friends were ambushed by child soldiers. They took his school certificate proving that he had passed his exams and also abducted his friend. Before he applies to study for further education, he will therefore need to go to Kampala to obtain a new copy of his school certificate. Another hurdle to be overcome. Lastly, I promoted CWB and discussed ABCT which he had not heard of. We discussed the importance of knowing your HIV status and checked he was aware where he could get tested. He will hopefully join up to coaching with the Lira Lions in December following his exams as he is keen to learn how to play cricket. I think he will be a natural.

My moment of the trip however arrived on the last day of two incredible, exciting, fun-filled yet busy and tiring weeks at the CWB Masindi cricket festival. It brought me to tears and has made an everlasting impact on me. I will never forget 13-year-old “Julia”.

I was sitting beside the TASO counsellors who were performing voluntary HIV tests for the school children attending the cricket festival. I had played a similar role during the other two festivals, liaising and ensuring kids who wanted to be tested could be. At the same time, I chatted with waiting children, asking them to complete CWB phone quizzes on HIV knowledge and gender equality.  Out of the corner of my eye, I noticed that the TASO counsellors were talking quietly amongst themselves and examining the testing strips. It is a rapid HIV blood test with results taking approximately 20 minutes, ensuring children know their status the same day. This time they took a different strip out and placed it on top of one of the existing tests. My teammate Nick was in the queue waiting to be tested and we looked at each other without exchanging any words, thinking ‘this doesn’t look good’.

Following the competitive final, which was played in great spirit with some excellent batting, fielding and teamwork, our local ambassador Manny called me over. He informed me that Julia had tested positive for HIV and asked me to speak to her. I am a qualified doctor in general adult medicine, specialising in geriatrics, but this is not a scenario I have ever encountered before in ten years of practice. I had to console, comfort and provide hope and reassurance to a 13-year-old girl who had just been diagnosed with HIV and believed she had been dealt a death sentence. As I approached, Julia was speaking to Isaac who is director of Family Spirit and used to working with HIV positive children. Isaac introduced me as a doctor from England. I introduced myself, shook Julia’s hand and attempted to place a consoling arm around her shoulder. Through my own experience of breaking bad news to countless adults, I have learnt that most appreciate a human touch. I can’t say that it ever gets any easier but as doctors in order to perform our role, we often have to slightly emotionally detach ourselves from the situation to give patients the best possible care. I looked into Julia’s eyes and although they had welled up with tears, she was paralysed by fear, petrified and unable to cry to let her emotions out. My eyes started tearing up as I could not bear to see her suffering and feeling so alone without her family or friends around. I had to swallow hard, look away for a minute and wipe away a tear to compose myself. If she saw a doctor from England was crying at the news, she was HIV positive, I am sure she would have felt even more dreadful. Although I have cared for many patients with HIV, I have never had to inform anyone of this diagnosis and faced with this vulnerable little girl I was almost lost for words. I told her I could see how scared and upset she was and that it was a perfectly natural reaction to the news. I explained that it was not a death sentence, she would have further blood tests and start on treatment and hopefully soon feel a lot better. She did speak English but having heard the test results, understandably found it easier to communicate with Isaac in her local dialect. Once a person has received bad news, they are often unable to process any further information so I sat beside her and asked her if she had any questions.

In a very quiet voice and broken English, Julia asked whether she could be retested. She was anxious that these might not be her results due to the numbers of tests completed and worried her results had been confused with another child’s. On her behalf, I relayed her thoughts to TASO so that Julia felt empowered her concerns were being heard. TASO confirmed they were her test results but reassured Julia that a second test would be done at the hospital alongside other blood tests including viral load, cd4 count and I suspect a standard set of checks of her overall health. Julia was also worried about being able to swallow the large ARV pills but was reassured by Isaac that there were different drug formulations and the doctors would find one that worked for her. I explained that back in the UK, I cared for HIV positive patients who were in their 90s and on treatment living a long and healthy life. With treatment I expect her to feel much better and told her when I return to Uganda, I hope to see her playing cricket for the Masindi Mavericks. I congratulated Julia on having the bravery to be tested and although this currently felt like the worst day of her life, reassured her that it would turn out to ironically be the best day as it marked the start of a future in which she knew her status and received healthcare and treatment to live a long and healthy life.

After discussion amongst the adults it emerged that Julia’s mother was HIV positive and Julia had probably been living with HIV for all of her life. Julia was unaware that her mother had HIV and it was unclear whether she was on treatment. This understandably came as a massive shock to Julia, however Isaac informed me it is not uncommon for HIV positive parents not to tell their own children their status or subsequently get them tested. Isaac persuaded Julia to give him her mother’s contact number so he could inform her with Julia’s permission and arrange ongoing support from her family. He planned on taking her to the hospital accompanied hopefully by her mother for further blood tests and to start treatment on anti-retrovirals. Julia was feeling isolated and petrified and threatening to run away, therefore it is vital that she has ongoing support from her family, teachers and healthcare organisation to ensure she is not lost to treatment. Manny then informed me that Julia’s teacher described noticing Julia had been unwell and possibly had some ‘infections’, although the details were unclear. My concern is that given the likely duration that Julia has suffered from HIV and the history that she has been symptomatic, she may already have AIDS. Prior to the test however, she had not appeared different to any of the other school children, running around and enthusiastically participating in the cricket festival. This really illustrates the message we have been giving to children over the past two weeks that you cannot tell who has HIV just by looking.

When Julia’s teacher came to reassure her, Julia finally let her emotions loose and sobbed into her school dress. The CWB team rallied round her and she was inducted into the CWB family and given a cap and T-shirt. Lastly, I gave her the most heartfelt hug and reassured her that she was not alone and would receive ongoing support via TASO and Isaac.
It is frightening to ponder what might have been if CWB had not come to Masindi and to Julia’s school to promote participation in cricket and our HIV awareness messages. Furthermore, if Julia’s school had not sent her (one of six out of 300 girls) as part of a team to participate in a festival and we had not insisted on testing being available Julia would still not know her status and therefore would not receive the appropriate treatment. It is vital that she receives treatment as soon as possible and I honestly believe she may have been dead from AIDs within 1-2 years if she had not been tested today. I hope this is truly a life changer for Julia and hope with treatment she starts to feel better and live a relatively normal and healthy life. Julia may not feel like it, but luck was on her side in getting tested in the first place. Despite the odds, she now knows her status and I truly hope and pray that Julia continues to be one of the lucky ones and becomes one of the success stories.

Despite the great work that CWB and the Ugandan authorities have done in the past 5-10 years, there is so much more to strive for. It shouldn’t be a matter of luck. That’s why it is important we continue to work alongside local partners to raise HIV awareness stressing the importance of ABC in preventing the spread of the virus. Education for all, both children and their adult carers is vital, as is reducing any barriers to open discussion of the subject such as gender preconceptions. We must demonstrate there should be no stigma attached to a positive status. Children and their carers need to feel empowered to seek out testing and treatment, reminding ourselves that the children of today, are the future mothers, fathers, teachers and Ugandan citizens of tomorrow.

Written by: Sarah Evans