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Giving birth with an undetectable viral load

Melinda Susanto is an excellent example of how early treatment and becoming undetectable can empower someone to make their own choices in life while living with HIV.

The 34-year-old was living in Indonesia in 2006 when she was caught up in the earthquake which wrecked the city of Yogyakarta and ended up in a hospital with dengue fever. After returning to New Zealand to recuperate, she went for a full health check only to test positive for HIV – something she puts down to one of three causes: condomless sex with an ex-partner who had injected heroin, getting a tattoo in Indonesia, or being on an intravenous drip while in hospital after the earthquake.

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Melinda Susanto, pictured above

Back in 2006 in New Zealand, before the removal of the CD4 threshold, having a high CD4 count and a low viral load typical of a recent infection meant she couldn't start treatment straight away. Melinda started her first treatment after her CD4 count started to drop. After a few months her viral load became undetectable. Unfortunately, after a series of side effects that doctors couldn’t explain, she stopped the treatment for a couple of years.

She went on the treatment for the second time for a completely different reason: she and her then husband, Dali, wanted to have children.

Mel, who now lives in Hastings, says her initial reason for starting treatment and getting to an undetectable viral load was for her own mental and physical health – “all that anxiety of should I or shouldn’t I, was doing my head in” – so that she and Dali (who had tested negative) were able to live without the stress of thinking the virus was transmittable.

During her second treatment, it was her research around UVL and pregnancy, childbirth and breastfeeding, which made her realise it was possible to give birth to a child with an exceptionally low risk of HIV passing on. Writing about her experiences for homebirth.org.nz, Mel explained how she and Dali decided to have little Liro, who’s celebrating his birthday next month.

"We wanted kids so badly, more than anything but for me, I couldn’t get the ‘what ifs’ out of my head even though I knew it would be fine.  At that time there had been over 400 children born to HIV positive mothers in New Zealand while on the very successful medication regime for pregnancy, with the mothers having an undetectable virus (well under 50 copies of virus per millilitre of blood), and not one had contracted HIV. I guess I was more concerned about the lack of studies done on the effects of the medications on children since they are exposed to them in the womb; however, any children of mummies living with HIV I knew seemed perfectly fine and gorgeous to me, just like many other happy families. We wanted to have a family like anyone else and decided there was no reason why not."

Although having taken control of her own decision to have Liro, Mel was disappointed at the levels of stigma, ignorance and bad advice surrounding HIV and UVL while she was pregnant – especially from healthcare professionals. When she and Dali decided to try for another child two years later, she did more research and fought harder to ensure her pregnancy would go according to how she wanted it.

“The first pregnancy and birth was a disaster – I came across so much discrimination and had to educate people all the time - so for the second time around, I planned it more rigorously and found a midwife even before I was pregnant who would support me having a home birth,” she says.

When Kirana was born, Mel was able to use her own breast milk (flash heated to kill the virus while still leaving the good bacteria) as well as donated breast milk to feed her child without worrying about HIV passing on.

After 10 years of marriage, Dali and Mel have since split up – and Mel now has a new partner of five months. So how did she feel about having to explain her HIV and UVL to the new man in her life?

“There are two clear benefits of being undetectable; first, your mental health is less stressed, and the second is being able to have a partner and know that he’s fine and safe – knowing that he’s happy to have condomless sex means that we don’t feel in any way different,” she says.

“With my new partner I was really nervous, and so I told him right from the start. Because I’m an advocate anyway, I thought it was important because if he was going to be funny about HIV, then I didn’t even want to know him. In the end, I just brought out this article I’d written and said ‘this is me’.” 

Mel’s new partner not only understood, but even has first-hand knowledge of HIV since a family member was also living with HIV. He fully understood the implications of UVL on their relationship.

Having spent the vast majority of her 12 years living with an undetectable viral load, Mel says she’s learnt not only to take control of her own decisions, but also the value of reaching out to others in the positive community for help and advice – even just to share stories.

“Getting treatment straight away and becoming undetectable is the key. The only one concern I have now is how you judge whether someone has remembered to take their meds, so you know they are still undetectable and haven’t become resistant,” she says. “But if I’ve got any advice for people living with HIV it’s around the fact that I think people don’t reach out for support enough."

“I’ve known people who’ve been positive for a while, and the best thing is to get some kind of connection with people who are positive or any of the organisations that are out there to help. I didn’t know they (the organisations) existed when I was diagnosed, but it makes a huge difference to share stories and learn about different medications, what they do and doesn’t do, all those other issues such as side effects."

“HIV can be daunting enough as it is without knowing where to go for those little questions like ‘I missed a night of meds, oh my god, what do I do? But now it’s not like that, because there really are people on hand to help you.”

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