Mother and daughter living positively with HIV

Shania* sat across from me, poring through the various contraceptives in front of her. Her mother, Celia* quietly sat next to her, striving to keep her discomfort at bay. We waited for the perky 20-year old to come back to the conversation. 

Like many children born in the early 2000’s, Shania was one of those who unfortunately came into the world having contracted the virus unknowingly, from birth. I first met Shania when she was just six, a curious and lively young girl with a 100-watt smile and bouncy pigtails. She stole my heart. I was just a general practitioner then, dabbling a bit with paediatrics to see if that was my area of interest, before specialisation. 

Shania was one of those children who swept away boundaries. She gave me a bunch of hugs, sat on my lap and went on to tell me everything about herself, which included her teddy bear, her cute dog, her favourite kindergarten teacher and her new ballet shoes. She was a talker who easily out-talked me, leaving me totally entertained! 

By the time her mum was doing the medical introduction, Shania had taken over the stethoscope and I was her patient. We spoke for an hour, as Celia retold the story of how she never knew about her HIV status until after birth. The most likely scenario was that she contracted the infection early in pregnancy, and her screening test missed it because she was still going through seroconversion. 

Having tested negative for HIV at her first clinnic, she went on to have an uneventful pregnancy and Shania was born vaginally at term, healthy and hale. At about eight months, Shania developed a rash that was unexplained. The paediatrician thought it was infantile eczema, or allergy to a new food as it was a period of weaning, but it didn’t quite respond to treatment as it should have. 

Eventually, at nine months, when Shania went for her vaccines, the nurse who saw her had been working in a public hospital, where she served a lot of mothers and babies with HIV. Upon seeing the rash on Shania, simply sent her to the doctor next door for HIV testing. She didn’t even explain to Celia what she thought. The doctor had a rough time convincing Celia to get Shania tested, but the wise doctor asked the mother to get tested instead. 

Celia confidently went for the test, knowing she had tested negative just over a year after. To say she was shocked would be an understatement. She felt like she had just been grabbed and thrown over a cliff into the cold menacing ocean below. 

Celia went through a tough year, getting multiple testing, counselling and immediate initiation onto antiretroviral therapy. She was double torn, to witness her baby go through the same. The weeks she impatiently waited for Shania’s PCR confirmatory test to come through were the most excruciating. 

She blamed herself for this predicament. She held herself responsible for not knowing her partner’s status before getting intimate; for going through the seroconversion phase in pregnancy without even knowing; for breastfeeding her baby without knowing she was inadvertently increasing the risk of transmission of the virus. 

It took a lot of work to get Celia in the right headspace to take on her new role as a mum of a baby with HIV, who needs additional care. By the time I met them, it had been four years of learning and of water finding its level. Both mum and baby were in a good place, healthy physically and mentally. As we parted ways in the paediatric clinic two years later, I knew these two were going to be just fine. 

We kept in touch occasionally, with Celia sharing Shania’s milestones as she grew, until adolescence hit and Shania came back into my care with adolescent reproductive health issues. At 12, Celia, had sat Shania down and walked her through her diagnosis, with the help of a psychologist. It had been quite the bump, but they both sailed through safely. During the clinics, both Celia and I strived to provide Shania with age-appropriate sexuality information to ensure she was empowered at an early age to appreciate the need to make safe choices. 

Shania had made us proud. She had handled her adolescence in a sterling fashion. She had thrived and made friends, never letting her HIV-positive status stand in the way of a full life. She had a close circle of friends who knew her status and still stayed close. At 17, she had even dated a boy she met at her swimming meets, making him fully aware of her status. 

At 20, Shania was a step ahead as usual. She had gone away to college and was not home often. During this holiday break, she wanted to get on a contraceptive for future need. She was well versed with the need for dual protection, she knew her chances of transmitting the infection were low but, just as she would never take a chance on her partner, so wouldn’t she take one on herself. She wanted to be sure she did not find herself with an unplanned pregnancy. 

Like most mothers, Celia was not ready to hear that her child was now an adult who could make decisions about her sexuality; but she made a vow to always stand by her daughter with regard to her health, and she was here to fulfill that vow. 

After a very engaging conversation, Shania made her choice and opted for a combined contraceptive patch. She liked the autonomy it gave her to take control of her life, without the pressure of adding to her daily oral medication. 

Shania has had a pretty good walk down the path of living positively with HIV. This is not to say that she did not face challenges that other children living positively have to face. However, she had a mother who sought to ease the burden of living with the infection and accord her a normal life. She was very intentional about health education, empowerment and preparing Shania to own her body, and make decisions that are right for her body. She ensured that Shania understood and embodied her agency. 

What was the result of this? Shania was better prepared to handle HIV-related stigma, not letting it get in the way of her self-confidence. She became very assertive in relation to decisions regarding her health and the added responsibilities that came with that such as clinics, medication and nutrition. She was committed to ensuring that she attained the best possible health she could have throughout her adolescence and her young adulthood. But most importantly, she did not let the virus define her. She enjoyed her childhood as best as she could, she is now a young adult with ambition and goals she intends to achieve without excuses. 

Right from the beginning, Celia embraced the theme of this year’s World AIDS Day; Take the rights path: My health, my right! Shania is not only a beneficiary of the rights path, but a true result of what this theme means from birth!

Dr Bosire is a gynaecologist/ obstetrician