Happy families

Sally Farthing is an HIV specialist midwife at West Middlesex Hospital in Isleworth, west London. She praises the measures – and the mothers – who together have sent the risk of a child being born HIV-positive tumbling in the last decade, from one infection in four births to fewer than one in 50. Are we on the right track to bring the rate down even further, she asks, or will new proposals halt that progress?

A prevention success

In the 15 years I have been working as a midwife with HIV-positive women, I have seen huge advances in the reduction of mother-to-child transmission. When I first began working in this area, the risk of transmission was anywhere between 25 and 40%. In 1995 we were able to reduce the risk of transmission from mother to child by two-thirds, from about 25% to about 10%, with the offer of AZT (zidovudine, Retrovir) monotherapy during pregnancy, intravenous AZT in labour, bottle-feeding and four weeks’ AZT syrup for the baby.¹

In 1999 we had the results from the International Perinatal HIV Group, which reported that elective pre-labour caesarean section demonstrated a further 50% reduction in transmission.²

Next we had the introduction of highly active antiretroviral therapy (combination therapy, or HAART) that enables us to achieve undetectable viral load. HAART during pregnancy, together with elective pre-labour caesarean section, bottle-feeding and four weeks of AZT syrup for the baby reduced the risk even further – to less than 2%.

Recent figures now show that women with an undetectable viral load at 36 weeks of pregnancy have the same risk of transmission (0.7%, or one transmission per 143 births) whether they have an uncomplicated spontaneous vaginal birth (normal delivery) or a planned caesarean section.³ Some studies have found even lower rates.⁴ So more and more babies are being born by vaginal birth and women with HIV can have normal deliveries.

Gone are the days of a gloomy outlook for babies born to HIV-positive women. But the data tell us that some babies are still entering the world with HIV or soon acquire it. Why? And are we doing enough to prevent children from acquiring HIV from their mothers?

A silent minority

To say that receiving a diagnosis of HIV during pregnancy is not ideal is, at the least, an understatement. Yet the vast majority of all the women I have worked with over the years are hugely relieved to have the knowledge that allows them to protect their baby from infection.

The proportion who know about their HIV infection prior to pregnancy has increased over the last five years. This is primarily due to the introduction of the routine offer of an HIV test at the first booking visit with the midwife, alongside all the other screening tests. In fact, testing of women has expanded so much, and women with HIV are feeling so much more optimistic about becoming mothers, that since 2005 the number of women in the UK who know they have HIV before pregnancy has exceeded the number of new diagnoses during pregnancy.

Clearly, though, we are missing some women – as demonstrated by a perinatal audit carried out in 2007.⁵ This audit looked at all pregnancies in the UK from 2002 up to March 2006. It showed that 95% of pregnant women were accepting the offer of an HIV test in pregnancy across the UK and that 90% of women with HIV were diagnosed before delivery. Excellent progress, and what a change from the late 1980s when 75% of women with HIV were unaware of their infection until their child was diagnosed with AIDS.

However, of approximately 3400 infants born to HIV-positive women over the four years, 87 infants (2.5%, one in 39 babies) were known to be infected. Of these, two-thirds were born to women whose infection had not been diagnosed and only one-third to women with a known HIV diagnosis.

The best news is that none of the babies born to women who received optimal care became infected. Problems identified in those babies who were infected were complex. Possible contributing factors included late diagnosis, premature delivery, and additional illness, as well as being born to mothers experiencing social and housing problems, communication and immigration difficulties, denial of HIV diagnosis and medication problems.

Of the 54 women who did not have their HIV diagnosed, 35% had declined an HIV test during pregnancy and 20% had become infected during pregnancy. The rest slipped through the net for a variety of reasons and were never offered a test.

Who were these women who either declined an HIV test or became infected during their pregnancy? Is there more we could be doing to avoid the unnecessary infection of a newborn baby?

Second tests and tests for partners

The challenge remains for midwives to make sure that the women who decline an HIV test at the antenatal booking appointment are offered a test again at later visits, and that the reason for declining is established and explored. Time constraints on the antenatal visits can make it difficult for a woman to open up to someone she may have just met but referral to the specialist midwife or health adviser would allow more time and privacy for longer discussion.

Midwives also need to remember that, during pregnancy, couples will not be using condoms for contraception and could be at risk of sexually transmitted infections, including HIV, at any time during the pregnancy. It is all too easy to assume that a test has been done at the booking visit and not to think about it again later in pregnancy.

However, the stigma and fear surrounding HIV is still all too apparent for some people who believe they will be ostracised and treated differently if they are diagnosed with this illness. Because of this they may be very reluctant to come forward for retesting.

Pregnant women themselves are somewhat targeted with a routine offer: but what about the fathers? How can we spread the message that they too need to think about the baby’s welfare and have an HIV test? This is a challenge for the community as a whole as well as for midwives. A negative HIV test for Mum does not mean that baby is fully protected.

Testing partners is a huge task, but it would protect even more mothers and babies from HIV infection if we started suggesting to women and their partners that they test together. Some of the women I have cared for say to me: “If only we’d received our diagnosis at the same time, I wouldn’t have been the one to be blamed. By me finding out first he assumes I am the one who infected him.”

Admittedly, not all partners attend antenatal clinic appointments and sometimes women are infected by new partners they meet while pregnant, so we need to talk to women about how to discuss the offer of an HIV test with their partners and to give them information about local testing centres and places where people can access rapid, walk-in testing (such as Know 4 Sure, run by Chelsea and Westminster NHS Trust); this is often helpful if there is anxiety about waiting for test results.

Newham University Hospital in east London ran a pilot project in which the male partners of pregnant women were offered HIV tests.¹ The project aimed to reduce late diagnosis of men by offering tests at week 20 of their partner’s pregnancy. Over 6000 women were tested as part of their antenatal care during a one-year period, but only 16 of their partners took up the offer. Barriers to testing may have included the fact that it involved referral to another hospital department, and that the results were not available immediately. A separate community testing project in Newham, using rapid tests, has had more take-up with men.

The National Screening Committee is reviewing the benefits of a second HIV test at the 28- or 32-week routine antenatal visit, and there have been some pilot studies of second-testing done at a couple of London hospitals. Looking at the statistics, though, the incidence of women seroconverting (becoming infected) later in pregnancy would appear to be low: roughly one HIV infection in 7700 pregnancies, compared to a general prevalence of one infection in every 575 pregnant women.²

The BHIVA/CHIVA (British HIV Association and Children’s HIV Association) guidelines on managing HIV in pregnancy (2008) state that: “At present, although desirable, there is no suggestion that universal retesting in the third trimester will become national policy; therefore case-by-case assessment to determine whether a woman is at continuing risk of acquiring HIV infection in pregnancy is the only option with repeat testing offered.”

There are two concerns about this, however. Firstly, as hospitals are seeing women earlier in pregnancy, preferably around ten to twelve weeks’ gestation, in order to offer screening for Down’s syndrome, some infections occurring at conception may still be in the window period and not diagnosed at this first visit.

Secondly, the common practice of women receiving the results of their ‘booking’ blood tests in their notes rather than in a face-to-face interview means there is little opportunity for women to have a post-test discussion. (These blood tests consist of a full blood count to check for anaemia, blood group, haemaglobinopathy screen, syphilis, hepatitis B and HIV.)

A post-test discussion would consist of information about the meaning of a negative HIV result. The advantages of having a second test could be raised, and a conversation about sexual health in pregnancy generally would be helpful. A negative HIV result so early in pregnancy could lead to a false sense of security for everyone.

Midwives, as a profession, need to be clear at the first test that a repeat test may be needed later in pregnancy and be sensitive to any concerns women may have. Women may also fear that HIV treatment will damage the baby or themselves.

There is good evidence that even diagnosing HIV infection late in pregnancy – at delivery or even within 48 hours after birth – can still offer a reduction in the risk of mother-to-child transmission. Most hospitals can have an HIV test result back within 24 hours and some even have access to point-of-care tests (where results are available in 20 minutes).

Even without previous treatment, treatment during labour and postnatally for the baby, plus the avoidance of breastfeeding, will reduce the risk of transmission to approximately 9%. A woman diagnosed in labour would be recommended oral tablets of nevirapine (Viramune), an elective caesarean section, an AZT drip, and combination therapy for her baby.

It is never too late to test, particularly if a woman has had no antenatal care. All blood tests for infection can be carried out on labour ward and obstetricians should be open to the idea of perinatal testing.

Breast versus bottle: what should we say?

Some interesting developments surrounding the use of bottle-feeding for women with HIV were announced at the BHIVA conference in April this year, and there is guidance being prepared by BHIVA regarding breastfeeding for women with HIV.

The crucial new proposed wording for the breastfeeding guidelines reads as follows:

In the UK, refraining from breastfeeding from birth should continue to be recommended. BHIVA/CHIVA acknowledges that, in the UK, the risk of mother-to-child transmission from a woman who is on HAART and has a consistently undetectable HIV viral load is likely to be low but has not yet been quantified.

Therefore, although formula feeding is still the best and safest option in the UK to prevent mother-to-child transmission of HIV, if a woman is on effective HAART and chooses to exclusively breast-feed having carefully considered the aforementioned advice, she should be supported to do so as safely, and for as short a period, as possible.

Although this statement will be welcomed by some people, it once again places the onus on women to try and weigh up risks and percentages when dealing with choices about their baby’s welfare.

It does mean that, as midwives, we can offer support rather than castigation to women who may be thinking about breastfeeding their baby, and that it does not automatically become a child protection issue.

However, will it mean that women who are under pressure from family members to breastfeed may give in to the wishes of others for fear of being thought to have HIV, rather than choosing to breastfeed because they truly believe it is best for their baby?

The benefits of breastfeeding have become a wide public health message generally, and increasing pressure and publicity surrounding breastfeeding must make it difficult for women with HIV to bottle-feed. But being asked to weigh up risks when it comes down to your baby’s health and possibility of acquiring HIV is a huge burden for a mother.

There are many women who come under intense pressure from family and friends to breastfeed and this statement may make it even more difficult for them to do what they feel is best for their babies. I hope midwives can offer good information and support to these women and that we do not lose the ability to supply free formula milk to women who need it.

In some hospitals the ‘breast is best’ ideology means that midwives may themselves exert pressure on mothers, consciously or otherwise, to breastfeed, and need to be supportive with bottle-feeding when it is necessary, showing women how to make up feeds, sterilise bottles and so on. In addition, exclusive breastfeeding and rapid weaning are far from easy and healthcare professionals need to appreciate the level of support required.

The community of people living with HIV was not supportive of this change. A joint statement by Positively Women and the UK Community Advisory Board said that revising the guidelines now might have a negative impact on women who were struggling to do the best for their baby by bottle-feeding.

A shortened version of the statement by Positively Women pointed out that if a woman is taking HIV treatment “It is a paradox to take HIV treatment, but to then put your baby at risk of transmission…PW cautions against a mixed message being given by BHIVA.” The general feeling was that it was premature to issue public guidance saying that breastfeeding might be supported under certain circumstances, and that there would be better evidence about the safety of breastfeeding while on HIV treatment in a few years’ time.

Conclusions: successes and failures

Looking back over the years, there have been great strides in the medical care we offer women during pregnancy and a huge reduction in the number of babies infected during pregnancy or childbirth. Have I seen the equivalent changes in the fear and social stigma that receiving a positive HIV test result produces? I am not so sure.

As Jason Warriner from Terrence Higgins Trust recently said “One of the biggest challenges we face in the UK is that one person in four with HIV doesn’t even know they have the virus, because they haven’t been tested.”

The wider community, and men especially, need encouragement to test for HIV in the same way they might accept screening for high blood pressure or diabetes. Early treatment enables HIV to be maintained as a long-term chronic condition rather than a terminal illness…and protects babies from infection.

The fear of a positive test result still prevents people from accessing the care they need. During pregnancy women have the added pressure to protect their babies – and they have accepted that challenge head on.

Isn’t it time other members of society did the same thing?

• For details of the “Know 4 Sure” testing scheme see: www.chelwest.nhs.uk telephone 020 8846 6699