Caring for HIV positive woman

This article is going to identify a woman who I have been involved with providing care for during the past year within clinical placements, and analyse the care with reference to Lesley Page's Five Steps of Evidence Based Midwifery Practice (Appendix 1). In order to protect the identity of the woman and her family and in accordance with guidelines from the NMC (2004), the woman will be given a pseudonym and be known for the purpose of this article as Jean, her husband as David.

Jean and David moved to the geographic area covered by my community mentor when she was 24 weeks pregnant. Although of Indian origin they had lived within the United Kingdom for the past two years. English was not their first language however communication was not an issue as they both spoke English to a high standard. Jean and David are both HIV positive. Although David had been diagnosed with the disease over twelve months previously, he had failed to share this with Jean and her HIV status was unknown until routine antenatal screening tests at 10 weeks gestation. At the time of commencing maternity care for Jean she remained unaware of her husband's diagnosis.

On the initial 'booking' visit that we undertook Jean proudly showed the scan pictures they had received after the dating scan at twelve weeks gestation. She discussed her HIV status and current drug regime and explained that she had been advised to continue with these throughout her pregnancy. The midwife who had been caring for her at the previous address had discussed the issues surrounding the birth of the baby and provided them with written information regarding transmission of the disease. Initially my mentor explained that she would not be the lead professional in Jean's maternity care and that she would need an obstetric, paediatric and haematology referral. Although Jean's maternity care would be provided by a multi-disciplinary team, it was important to Jean that her pregnancy and the birth of her baby remained woman focussed and not HIV focussed. Jean had already decided that she would have an elective caesarean section at the consultant led maternity unit in line with current guidelines, and that they would be guided on timing of the delivery by the medical team. She was anxious however to be in her words a 'normal mum'. She wanted the baby to be given to her as soon as possible after the delivery, wanted skin-to-skin contact and intended to breastfeed. Although she had received information regarding feeding choices and current recommendations, Jean knew women that were HIV positive and who had breastfed their babies in her home country. She considered this to be a fundamental part of mothering, the normal way within her culture to nurture a newborn baby and could not imagine feeding her baby by any other method.

After the initial meeting with Jean and David we felt that providing them with more detailed information about options for feeding their baby would enable them to be fully informed of the facts and in a position to make a decision based on the best available evidence. The HIV virus can be transmitted from mother to baby via the placenta whilst inutero, at delivery and through breastfeeding. This is known as 'vertical transmission' (Kennedy, 2003, p.38). In the United Kingdom over 300 babies are born annually to women infected with the HIV virus (RCM, 1998). Of these babies three quarters are born to women who are undiagnosed at the time of delivery (RCM, 1998) and consequently do not benefit from management options that can limit the risk of transmission-drug regimes for both mother and baby, delivery methods and avoiding breastfeeding (RCM, 1998). Currently the risk of transmitting the HIV virus from mother to child in the absence of intervention is between 15 and 20% in European countries where babies are formula fed, and between 25 and 40% in African countries where babies are breastfed (RCOG, 2004). This risk can be reduced to less than 2% in circumstances when a combination of drug treatment for mother and baby, delivery by caesarean section and avoiding breastfeeding are adopted (DOH, 2004). In the United Kingdom it is recommended that women with the HIV virus do not breastfeed (DOH, 2004) as this doubles the risk of transmission (Dunn et al, 1992) from 14 to 28% (RCOG, 2004).

The NMC's code of professional conduct: standard for conduct, performance and ethics states that as a registered midwife 'You must respect patients' and clients' autonomy-their right to decide whether or not to undergo any health intervention-even where a refusal may result in harm or death to themselves or a fetus, unless a court of law orders to the contrary' (NMC, 2004, p.5-6). Although by breastfeeding the baby Jean would be increasing the risk of transmission of the HIV virus, in the absence of a court order this decision would have to be respected by the health professionals involved in the care of both mother and baby. The Department of Health says that 'Ultimately the decision about feeding is the mother's' (DOH, 2004, p. 10). In these circumstances the midwife may find herself in a difficult moral and ethical position as respecting the rights of the woman to make an informed choice may impinge on the future health of the baby. Within the United Kingdom there have been cases of HIV infected mothers taken to court in order to prevent them from breastfeeding their babies under the Children's Act 1989. One such case was brought to court by a social services department after a woman infected with the HIV virus continued to breastfeed and refused to consent to the child being tested for the virus. As a result of the ruling that the child should be tested the parents fled the country. The father returned to the country with the child after three years on the run and after the death of the mother. By this time the child had been diagnosed with the virus (Boseley, 2002).

Research surrounding the transmission of the HIV virus through breast milk has been undertaken and researchers continue to evaluate transmission rates through studies being undertaken in African communities. In 1999 Coutsoudis et al. assessed the impact of breastfeeding on the transmission of the disease to 549 babies born in South Africa to HIV positive women. These babies were assessed at three months following either exclusive breastfeeding, feeding by artificial means or mixed feeding where the baby is fed both breast and infant formula. They concluded that those babies who were exclusively breastfed had a similar risk of transmission to those that were never breastfed, and a lower risk than babies whose feeding was mixed. The authors of this research called for further research to be undertaken in this area but based on these findings proposed that mixed feeding increased the risk of transmission due to damage to the gut caused by contaminants within artificial feeding methods counteracting the immune factors within breast milk. The authors also suggested that babies exclusively breastfed had a lower probability of infection than those that were never breastfed as a result of the immune factors within breast milk neutralising the virus in babies that were infected at delivery (Coutsoudis et al, 1999). These findings were followed up when the babies were fifteen months old and the researchers found that the risk of transmission of the HIV virus was lowest in the group that had never been breastfed, followed by the group that had been exclusively breastfed and finally the risk of transmission was highest in the group that's feeding had been mixed.

If Jean and David had remained within their home country, their baby would almost certainly have been breastfed. This would not only have been influenced by custom and tradition but also by the availability of infant formula and resources for safe preparation of formula milk. Within the United Kingdom formula milk is readily available and used as a safe alternative to breast milk. The World Health Organisation states that 'When feeding with infant formula milk is acceptable, feasible, affordable, sustainable and safe avoidance of all breastfeeding by HIV-infected women is recommended from birth' (WHO, 2004, p.8). In line with these recommendations and the guidelines issued by the Royal College of Obstetricians and Gynaecologists (2004), the Department of Health (2004), the Royal College of Midwives (1998) and the local NHS Healthcare Trust (2001), we advocated using infant formula to Jean as the safest method of feeding that reduces the risk of transmission of the HIV virus to the baby.   We offered assistance in the safe preparation and storage of formula milk as neither Jean nor David had prepared infant formula previously and they had little knowledge on sterilisation of equipment, and provided information to them on the financial schemes in place within the United Kingdom to enable them to purchase infant formula. We felt that Jean would also benefit from being referred to the support networks in place nationally for HIV mothers including 'Positively Women' and the Terrence Higgins Trust'. Support groups are also available that are exclusively directed at African nationals and these contact details were provided.

Throughout our contact with Jean in the antenatal period we revisited the issue of method of feeding. Page advocates talking the evidence through as the fourth step to evidence based midwifery practice (Page, 2000) and we related the evidence available from the studies in Africa to Jean's circumstances in the United Kingdom. Jean expressed her fears for the future surrounding her HIV status and imminent role as a mother and her desire to do the 'right thing'. Within her culture this was to provide her baby with breast milk, however she recognised that within her individual circumstances she would be providing the baby with the lowest risk of transmission of the virus if she used infant formula. We advocated accessing the available counselling services as Jean was considering issues about her own future and that of the baby in the event that her circumstances changed, and we felt that Jean would benefit from exploring these issues further.

In the event of an HIV positive woman choosing to breastfeed her baby despite being in possession of the available evidence the DOH (2004) advocates that advice to limit the risk of transmission be given. Education about the increased risk of transmitting the infection if feeding with cracked nipples and certain infections should be provided and assistance given after birth in positioning and attaching baby so as to reduce the risks of these problems arising (Newell, 1999). Exclusive breastfeeding should be recommended however advice given to discontinue breastfeeding and substitute with infant formula or solid food dependant on the age of the child. Mixed feeding should be avoided completely as the African studies previously mentioned suggest this increases the risk of transmission.

Jean decided after much soul searching that she would use infant formula to feed her baby when it was born and that she would avoid breastfeeding. Ultimately she wanted to do whatever was best for the baby and after exploring the issues surrounding feeding this she decided was for the baby to have artificial milk. With the help of my community mentor, Jean and David made contact with support groups and Jean was able to meet other HIV positive mothers during her pregnancy. Due to the location of their home unfortunately this meant travelling a substantial distance and in order that Jean did not feel isolated from her peers she was also introduced to 'baby' groups that run locally. These groups welcome both pregnant women and women with infants up to the age of eighteen months, enabling Jean to build up a network of friends and support within her new home town. Although much of her antenatal care was undertaken at the local consultant led unit, we ensured that throughout the pregnancy we met regularly to carry out antenatal appointments and to discuss meetings that Jean had attended at the hospital and issues that had arisen as a result. We encouraged her to think about other aspects of the imminent birth and journey towards motherhood and invited them both to attend parentcraft education provided by the midwife and health visitor locally. Although Jean's maternity care was 'high-risk' we focussed on providing woman-centred care in a holistic manner, focussing on Jean's needs and enabling her to achieve a positive experience of pregnancy, birth and early parenting.