HIV heroines of yesteryear deserve a standing ovation

First Lady Margaret Kenyatta cuts a cake after launching the Kenya Framework for Elimination of Mother-To-Child-Transmission of HIV and Syphilis 2016-2021 during the Beyond Zero Summit on June 13, 2017. PHOTO | FILE

What you need to know:

  • The babies who were born HIV-positive over 20 years ago, are all grown up! They are healthy, happy, productive and living a full life! HIV has nothing on them. They are not just living with the HIV virus, they have lived above it.
  • Most of our young HIV heroes did not get a chance to know their mothers. They may never appreciate the struggles these women went through. They may only be confined to the feeling of growing up as orphans.
  • We may be comfortable now that HIV is no longer a death sentence, but to these mothers, this was not the case 20 years ago. Most mothers lived as if it was their last day with their child.

On 25th November 1999, the then President Daniel Arap Moi took the bold step and declared HIV a national disaster.

The Ministry of Health had diagnosed the first case in 1984 and the country had faced a steady downhill trend since then. Over 700 people were dying daily from HIV-related illnesses,  across the country. Hospitals were overflowing with 40 to 70 per cent of beds occupied by patients suffering from HIV/AIDS and related illnesses.

There was very limited knowledge concerning the illness and as a result, stigma was real. Everyone was up in arms; specialists struggling to find a way to deal with the pandemic, religious leaders chastising anyone daring to advocate for condom use, a Ministry of Health under siege, struggling with the huge financial implication, and a people who were scared of the unknown.

The presidential declaration was the beginning of order. The National Aids Control Council was established and the journey towards taming the demon started. Public awareness and education started, HIV comprehensive care models begun to be discussed and Kenya got the attention of the HIV world. This gave rise to accessibility to anti-retroviral medication to all who needed it and today, we can say that though we are far from killing the serpent, we have a firm grip on its head.

Today I reflect on this as I look at a special group of young men and women in Kenya. These are our badges of honour, representing the little victories we have firmly won in this little corner of the world. They are the babies who were born HIV-positive over 20 years ago. They are all grown up! They are healthy, happy, productive and living a full life! HIV has nothing on them. They are not just living with the HIV virus, they have lived above it.

BRAVING STIGMA

Positive living has inspired them to take charge of their lives. Advances in medicine have allowed them to start families of their own.

They remind me of Kate* a breath of fresh air. She fully embraced her life and faithfully worked to ensure her baby was born HIV-free. She carried her anti-retroviral drugs everywhere she went and had a permanent alarm on the phone to remind her when to take her next dose.

She carried her baby’s medication in her baby bag to the hospital when she came to deliver, despite assurance that we were well-stocked at our pharmacy. No, she wouldn’t take any chances that her baby may miss her drugs. She would do anything within her power to make sure her baby was born HIV-free. She had lived with the virus all her life and felt that life would be so much easier for her daughter if she could side-step it.

A friend once told me how as a family, they had just found out that her teenage brother was HIV-positive. He was 16 years old and had never exhibited any symptoms all his life. This plunged the family into a lot of soul-searching, as they had never really understood why they lost their parents at such a young age. The brother was three years old when their mother passed on. The abandonment they faced from relatives finally began to make sense.

The young man is doing well and is now in the university, excelling in his studies and not letting his status hold him down. He has created a special personal relationship with his anti-retroviral drugs; they are his best friend.

As we celebrate these young people, we should not forget to take a moment to look at the journey of the mothers who brought them into this world. These brave women who, against all odds, survived the HIV scourge, to bring forth life. Many of us may not comprehend just how bad things were back in the late 90s and early 2000s, for patients who had HIV. ARVs were not available to all. The concept of PMTCT (prevention of mother-to-child transmission) had not even been thought of.

These women braved stigma from the society at a scale never imagined before. Many were widowed and left with the burden of raising their families despite their ill health. The lack of psychological support sent many to an early grave. Gynaecologists around the country delivered many premature babies as their mothers could no longer hold on long enough for the baby to get to term.

Agnes* was one such mother. She came to us in terrible shape. She was 33 weeks pregnant, with stage four disease, suffering from tuberculosis, meningitis and many other opportunistic infections. She needed intensive care, but we did not have space in the unit. We kept her in our maternity unit as we waited for a miracle to happen upstairs and free up an ICU bed for her. Despite all the support we summoned for her within the unit, she died at midnight. Her little baby made it to the newborn unit and sadly succumbed to infection. Her last words were, “My baby…”

DEATH SENTENCE

Most of our young HIV heroes did not get a chance to know their mothers. They may never appreciate the struggles these women went through. They may only be confined to the feeling of growing up as orphans. A few may be lucky to still have their mothers with them, those  whom comprehensive care caught up with and averted death.

I hold these mothers in very high regard. Despite the pressure they faced, they introduced their babies to treatment, faithfully administered the anti-retroviral drugs even when they had to hide them from relatives, exclusively breastfed their babies even when they felt they could not manage one more day, and aggressively shielded their little ones from the kind of stigma they themselves had faced.

They struggled to impart in these little ones how to navigate this world despite their challenges.

We may be comfortable now that HIV is no longer a death sentence, but to these mothers, this was not the case 20 years ago. Most mothers lived as if it was their last day with their child. It is not possible to imagine what ran through their minds as they lay down to sleep. What plans did they make for the care of their children after they were gone? What did they feel when they heard a fellow mother, struggling with HIV had passed on and left their little ones?

These mothers, long dead or still with us, are the fire beneath our wings in the fight against HIV. They sacrificed everything and today we can brag that we have made great advances in the management of this disease. I will forever hold a candle to them!