Lana
Lana was diagnosed in 2019, when she was pregnant with her first child. She formula fed her older child and is currently undecided about how to feed her new baby.
Lana is married with a two-year-old child and is currently pregnant. She is a registered nurse and health researcher.
More about me...
When Lana had her first baby, she suffered from severe depression. She felt that her healthcare team was focused so completely on preventing HIV transmission that they neglected to care for her: “everything for the baby…. like I wasn’t existing”. As she had been diagnosed late in pregnancy there was not even any discussion about breastfeeding.
Lana has an undetectable viral load now. She and her husband are undecided about whether to breastfeed their unborn baby. Lana wants to consider breastfeeding but does not feel supported by her medical team to do so and feels like they do not like her asking questions. She has been researching the available evidence from across the world. She expressed frustration about the limited research available on breastfeeding and HIV, especially from high income settings.
Early in her current pregnancy, Lana experienced hyperemesis, which is a severe form of morning sickness. This meant that her viral load became detectable, and so her husband needed to be tested for HIV (he tested negative).
Lana had an allergic reaction to her HIV medication when she first started taking it.
Lana had an allergic reaction to her HIV medication when she first started taking it.
First, I went into denial, and I had to embrace it because I had to protect the unborn child. My husband did test, it was negative, and I have to protect the family so the first medication they gave me I had very terrible allergic reaction. I had swollen lips; I couldn’t breathe. I had rashes all over me and that affected my sort of trust in the care they were providing then I was in [ward]. So, when I got job in [City], I transferred to [City]. I was very reluctant to commence any treatment because the first one I had nearly killed me, nearly, I survived narrowly.
Even the doctors were, the extent of the reaction shocked everyone. So, then I moved to [City] and met the team here and I think I was it about six months then I started the treatment that I had for that short period, I was taking two pills and it did work, it did work so after my baby I switched to the treatment which I’m now having, and it’s been okay.
Lana was diagnosed during her first pregnancy and wanted her medical team to think about her needs as well as her unborn baby.
Lana was diagnosed during her first pregnancy and wanted her medical team to think about her needs as well as her unborn baby.
I think everybody was just concerned about, ‘Oh you’re six months, you’re getting to a very risky period. We’ll have to bring the viral load down to keep the baby safe.” How I feel about working wasn’t really considered.
And I think all of them boiled down to what made me have depression when I had the baby because I had a very terrible depression, and I struggled a whole lot before I was able to adjust.
So, it was just about the baby, you know, bring milk for the baby. Everything was about the baby. It wasn’t more for me I feel like I wasn’t existing exactly just, ‘We’ll give her tablet, let’s take care of the baby.” That’s how I see the whole thing.
Lana asked questions about the guidelines but got few answers. Pregnant at the time, Lana felt like her HIV clinicians judged her as incapable of understanding research because she is Black.
Lana asked questions about the guidelines but got few answers. Pregnant at the time, Lana felt like her HIV clinicians judged her as incapable of understanding research because she is Black.
I said, “So, why are them examples so concerned of the social aspects?’ What about the physiological aspect of it? Why are they so narrowed down? Why is not being talked about?’ And that’s the few questions I’ve asked them and clearly no-one, no-one at all has answers because I even asked one of the doctors, “Even this breastmilk can be analysed in the laboratory. Do we have any laboratory studies?” Just like we analyse blood samples that analyse human milk from affected mothers, even mothers who have high viral load are compared with women who have low viral, undetectable viral load. What’s the difference?” and the doctor said, Oh he hasn’t researched to see if there are laboratory studies done, and I was like, ‘okay so the information you provided where did it coming from?’
They said, “It was guideline.” I was like, “What is the guideline based on? What informs the guideline?”
And what answers did you get?
They didn’t give me answer, you know, I think like I said maybe because I’m a black person they don’t understand that I have research understanding, I have understanding of how some of these things work. Most policies are informed by research and research can be outdated after some time when we have new knowledge and if there is no new knowledge you know you’re interpreting the old knowledge with caution. Maybe something may have changed so when I ask them questions, they treat it like, “Oh she doesn’t have enough knowledge, or she may not understand.”
Lana's GP incorrectly told her that she would have to tell her work about her diagnosis and threatened breech her confidentiality is she did not.
Lana's GP incorrectly told her that she would have to tell her work about her diagnosis and threatened breech her confidentiality is she did not.
Well, I think so because there was something that happened between my GP and I think I went to the hospital and my GP said, “Oh because you’re a nurse your line manager needs to know your status because we need to protect the patient from you.” And I was like, “Hold on a minute, that is none of your business and it’s none of my line manager’s business.” That lies with Occupational Health, and she went, “Well she needs to inform my GP,” and I was like, “You are digging into my privacy, and I wouldn’t take it up,” so when I called my team looking after me, they said, “She has breached confidentially. It’s not in her power to do so.” So and I said I wanted to know how the matter ended. No-one contacted me to say because the GP, is an Indian and before then I’ve had a chat with occupational team, occupational health, and they told me, “It’s none of my line manager’s business to know,” that a lot of people have different ailments. What is important is that I look after myself,” and so, so and the GP says, “No your line manager must know because they need to protect the patients from you.” So, this is some of the things that they make me think that there is more to the way I’m being treated given my ethnic background because I doubt she would treat a white person that way.