For many people, pregnancy can be a daunting and challenging time to navigate, with unique considerations at every stage, from conception through to birth. Living with HIV adds another layer of complexity to the situation.
It has been over 40 years since the first cases of HIV were identified (HIV.gov, 2023), and advances in treatment have evolved significantly to the point where many people living with HIV can lead healthy lives with a normal life expectancy (The Antiretroviral Therapy Cohort Collaboration, 2017). It is now the norm for healthy, HIV-negative children to be born to mothers diagnosed with HIV (Afran et al, 2014). However, stigma and misinformation in health services remain. So, what implications does this have for people living with HIV when it comes to pregnancy?
Victoria's experiences
Victoria Roscow, age 30 years old, is a Manchester-based marketing manager and a woman living with HIV.
‘At first, my HIV check-ups were completely separate to my antenatal appointments, with little communication between the two’.
Victoria Roscow, gave birth to her son in 2022. Victoria shared how she was diagnosed with HIV at her 9-week scan, following an HIV test performed as part of routine antenatal blood testing 3 weeks prior, although there was no explicit verbal confirmation that HIV would be one of the conditions screened for.
‘I was having blood tests at one hospital and then repeating them at another’.
From her account, the integration of her HIV and pregnancy support improved after being referred to a hospital with a dedicated HIV pregnancy unit, where both a midwife and an HIV specialist could be present at her appointments at the same time.
When asked about the quality of her antenatal care, Victoria was largely positive.
‘I didn't face any discrimination from the midwives, but that may have been because they were also HIV specialists’.
However, it is worth noting that a joint care approach can potentially be a hindrance as well as a help, and in Victoria's case, the care she received was so heavily focused on monitoring her HIV that some aspects of her pregnancy care received less attention than they otherwise might have. The fact that her baby was in the footling breech position was only identified at 39 weeks by a non-HIV specialist midwife, necessitating an emergency caesarean section.
Victoria's account suggests that HIV overshadowed her pregnancy, with clinicians focusing so heavily on keeping her viral load suppressed that antenatal care may have been somewhat deprioritised. This highlights the importance of seeing the human being beyond the medical condition, or in Victoria's case, the viral load, remembering that they have a life, and needs and challenges. It is imperative that we understand as much as we can of that life to deliver effective, all-encompassing care.
After a person living with HIV has given birth, the British HIV Association and other international guidelines recommend formula feeding rather than breastfeeding because of a very small, but not absent, risk of HIV transmission to the infant (Gilleece et al, 2023). The hospital where Victoria gave birth had supplies of formula milk for women unable to breastfeed, while also encouraging women to bring their own.
On one occasion, while recovering from her caesarean section and having run out of the milk she brought for her son, she was told by a postnatal midwife that she was not allowed any more formula.
‘When my husband mentioned that I had HIV and needed formula, the midwife actually shushed him, out of fear that other mothers on the ward would hear’.
A question to be asked is why Victoria's postnatal care was so different from her antenatal care. All hospitals in the UK have access to the British HIV Association's pregnancy guidelines, and one would expect that during handover from birth to postnatal care, her HIV status and the issue of infant feeding would have been discussed.
The wider context
Victoria's experience underscores the fact that HIV remains a poorly understood and hugely stigmatised condition, even in healthcare settings, despite the tremendous advances that have occurred over the last few decades. Regardless of the presence of HIV or not, a midwife does not need to be a specialist to treat a new mother with care and respect. Victoria's experience clearly underscores the work that is needed to help people understand HIV in the present day.
So where does this leave us? Victoria stated that her experiences of antenatal care were generally positive, both with regard to her specialist care from the HIV midwives, but particularly with regard to their humanity. Their kind bedside manner and willingness to make physical contact had a profound beneficial effect, something that many people living with HIV who engage with healthcare speak of (Wood et al, 2018). In the author's clinical experience, many people have noted that healthcare practitioners avoid making physical contact with them, even going so far as to wear gloves to shake hands. It is incredible and unnerving to hear that this still goes on, and that even in 2024, there is a lack of understanding as to how HIV is transmitted.
Victoria's story highlights the need for HIV in pregnancy care to be a routine part of training for midwives. The Royal College of Nursing (2019) currently suggests that specialist training is needed for nurses and midwives who want to engage in sexual health, including HIV. However, some understanding of the current state of HIV is important for all healthcare workers, not just those who specialise in sexual health and HIV, to ensure that people with HIV receive the same considerations as other users of health services.
‘HIV remains a poorly understood and hugely stigmatised condition… despite the tremendous advances that have occurred over the last few decades’
Victoria's story also emphasises the importance of healthcare professionals seeing the individuals they are caring for as people first, and not defining them by their medical condition. This also applies to attitudes in society. Social media can play a key role in addressing attitudes about HIV; having received her diagnosis, Victoria took to TikTok to share her journey navigating pregnancy and HIV. She also appeared in the HIV in View campaign, in partnership with ViiV Healthcare (2023), to share her story and address outdated views of HIV and what it looks like.
Postnatal HIV care
Training around HIV and looking at a person holistically could undoubtedly address some of the issues Victoria faced with her postnatal care, but what about her experiences of HIV once she had given birth?
‘I made sure I stayed healthy when pregnant, but it was after giving birth that my diagnosis really hit me, as I was now needing to look after just myself… Psychologically, HIV hit me really hard after having my baby; it was just me and my husband on our own, and I was too nervous to go to mum groups and be around HIV-negative mothers’.
Throughout my career as a physician, I have seen pregnant women living with HIV engaging well with their healthcare team to ensure their baby remains negative. However, there is often a challenge for them to remain adherent to treatment after the child is born, as the pressures of caring for the new baby and other commitments can take precedence over a woman's care for herself.
I believe that every hospital with an antenatal unit that serves people living with HIV should have access to a network of ‘mentor mothers’, such as the UK 4M Network of Mentor Mothers (2024). This group consists of women living with HIV who provide physical and psychological support and guidance around remaining adherent to treatment and staying healthy both during and after pregnancy. The postpartum period is a challenging time for most women, but particularly so for women with HIV, so it is crucial that they feel supported physically and mentally.
Conclusions
My discussion with Victoria was incredibly insightful – I heard things that were at times surprising, at others disappointing, but overall, it perfectly illustrates the importance of whole-person care and, as in Victoria's case, ensuring that both HIV and antenatal care needs are equally prioritised.
Postnatal care in the UK is recognised as a persistent challenge, and a guideline from the National Institute for Health and Care Excellence (NICE, 2021) specifically devoted to postnatal care was published in 2021. The guidance calls for an individualised and sensitive approach to care that is delivered in a supportive and respectful way. Women living with HIV should also be able to expect such care at every stage of pregnancy, and all women, regardless of their HIV status, should be supported to look after their health, both mental and physical, once they have given birth.
I applaud Victoria for her courage in sharing her story, and I hope that, through her social media advocacy and work as part of HIV in View, attitudes can be changed so that future mothers living with HIV can receive the all-encompassing, quality care that they deserve.
‘Women living with HIV should…be able to expect [individualised, supportive and respectful] care at every stage of pregnancy, and all women, regardless of their HIV status, should be supported to look after their health, both mental and physical, once they have given birth’