Supporting women living with HIV to exclusively breastfeed

In the UK and other high-income settings, the safest way to feed infants born to women living with HIV is with formula milk as there is ongoing risk of HIV exposure after birth through breastmilk.

BHIVA continues to recommend women living with HIV feed their infants with formula milk. Some women are keen to breastfeed and, in specific circumstances, this should be supported with appropriate counselling and support.

Background and WHO approach

The World Health Organization (WHO) recommends that all women living with HIV should receive life-long antiretroviral therapy (ART) to support their own health and to ensure the wellbeing of their infants². All women diagnosed with HIV in the UK are commenced on ART and remain on this for life.

The WHO recommendations on HIV and Infant Feeding are based on a ‘Public Health Approach’ that can be used in all settings globally. Most pregnant women with HIV live in countries where many do not have access to a safe water supply, an uninterrupted supply of formula milk, lifelong ART, and health care that includes regular monitoring of maternal and infant viral HIV load.

Breastfeeding protects against infectious diseases, particularly diarrhoea and pneumonia, and malnutrition, and provides optimal nutrition for the first 6 months of life and ongoing nutrition after that³. In many situations for women living for HIV their infant has a greater chance of survival if they are breastfed than if they are not⁴. Infant feeding recommendations for mothers living with HIV in these settings should support the greatest likelihood of HIV-free survival of their children (i.e. children who are free from HIV but also survive and do not die of malnutrition, diarrhoea, pneumonia or other infectious diseases).

Therefore, in many settings mothers living with HIV are recommended to exclusively breastfeed for the first 6 months and continue breastfeeding for up to 24 months or longer (in addition to complementary feeds) while being fully supported to adhere to their ART treatment. The WHO 2023 guidelines also state that any breastfeeding is better than no breastfeeding, and mothers and health care workers can be reassured that ART reduces the risk of postnatal HIV transmission in the context of both exclusive and mixed breastfeeding.

Current evidence suggests that even if a woman has an undetectable viral load, she may still transmit HIV to her child through breastfeeding. The chances of this are small but possible. In the Promise Study⁵ where women were provided with ART and breastfed, transmission to their infants was low:

• At 6 months 0.3% (i.e. 3 infants out of 1000; Confidence Interval 1-8 per 1000)
• At 12 months 0.7% (i.e. 7 infants out of 1000; Confidence Interval 3-14 per 1000)

However, in the Promise Study the pattern of breastfeeding in the first 6 months (exclusive or mixed) and adherence to maternal medication were not documented. Maternal CD4 count and viral load were only monitored at delivery or Week 1 post-partum.

Women should be counselled on the very small possibility of transmission and supported to make breastfeeding as safe as possible (see below).

The British HIV Association (BHIVA) Position on HIV and Breastfeeding

The BHIVA guidelines state that current evidence indicates that even if a woman has an undetectable viral load this does not guarantee that she will not transmit HIV. In the UK the group advocates that avoidance of breastfeeding is the safest way to avoid postnatal transmission of HIV.

BHIVA recommends that formula milk is provided free of charge to all women living with HIV.

The British HIV Association (BHIVA) recommendations for the maternal conditions necessary for breastfeeding

The guidelines recognise that women living with HIV may wish to breastfeed and recommend ways to make this as safe as possible.

Women can be supported to breastfeed if they:

• have been on ART for at least 10 weeks AND
• have 2 documented HIV viral loads less than 50 HIV RNA copies/mL during pregnancy, at least 4 weeks apart AND
• have an HIV viral load less than 50 HIV RNA copies/m/ after 36 weeks' gestation (before delivery)

1. Where breastfeeding is a woman's choice, this should be exclusive breastfeeding for 6 months

For the first 6 months of life exclusive breastfeeding is recommended.

This is based on studies of breastfeeding women in Africa who were not on ART (these studies were conducted prior to the government roll out of ART^6,7. HIV transmission was lower in women who exclusively breastfed compared to those who mixed breastfed with formula or solids. The biggest risk was mixing with solids before 6 months. It is important to note that these studies were conducted early in the epidemic and the women were not taking any ART.

2. Duration of breastfeeding

Studies have shown that the longer a woman breastfeeds the more chance there is of transmission to her child^5,6. The BHIVA guidelines recommend breastfeeding for a maximum of 6 months.

After this there should be a transition to complementary feeds and formula milk over a short period of time (see below).

Guideline Objectives

The objective of this guideline is to make breastfeeding as safe as possible for women living with HIV. The guideline is supported by the latest evidence base and minimises risk whilst reflecting women’s choice.

Core Standards of Care

Women should be counselled by a relevant health professional of the small ongoing risk of breastfeeding whilst living with HIV. This should be when first discussing feeding choices. Where there is a plan to breastfeed, women should be provided with a BHIVA patient information leaflet and advised:

• to breastfeed for as short a time as possible
• to exclusively breastfeed for up to six months
• on the management of breastfeeding challenges
• on how to access breastfeeding advice and support
• to seek advice if they or their baby has gastrointestinal symptoms and to stop breastfeeding whilst awaiting support
• on transition to complementary feeds and formula milk when ceasing to breastfeed over as short a time as possible

ART and Management plan

Women should be offered appropriate ART during pregnancy and in labour to maximise the likelihood of viral load suppression. Regimens will vary according to maternal health and viral load. Each case should be considered on an individual basis. A plan of management should be clearly documented in the mother’s electronic patient record prior to delivery.

HIV viral load should be reviewed at 36 weeks and a final decision made regarding mode of delivery. A delivery plan should be clearly documented on Badgernet.

Further information on intrapartum care is available from HIV in Pregnancy and the Prevention of Vertical Transmission Individualised Management

Preparation for breastfeeding

To make breastfeeding as safe as possible, it is important to provide robust antenatal education and support. This will minimise risk and prevent early challenges that may compromise breastfeeding.

Antenatal colostrum harvesting (See Appendix 1) can be supported from 36 weeks gestation. Colostrum can be used in the early days to support breastfeeding. Where colostrum is not available, DHM would be the next choice.

To minimise the risk of early common breastfeeding challenges it is important to get breastfeeding off to a good start. Antenatal education provided by an appropriate health professional should highlight the importance of skin-to-skin contact, keeping the baby close, recognising feeding cues and responsive feeding. Teaching position and attachment and the signs of good milk transfer and effective feeding will also minimise risk and the need for supplementation. Further information and resources are available on Parentclub

Information should also be provided in the antenatal period on the management of healthy breasts. Women should be encouraged to seek early help if there are any cracked, bleeding or damaged nipples, signs of mastitis (e.g. pain, redness, hard areas in the breast). This is to support the prompt management of early breastfeeding challenges and protect longer term breastfeeding whilst minimising the risk of transmission.

Where supplementation is required during the period the mother is breastfeeding, maternal EBM is the first option. Where EBM is not available, DHM is the next option. The introduction of formula milk should be avoided. Where formula milk is introduced, breastfeeding should be stopped as this increases the risk of transmission. A plan for safely reducing breastmilk should be discussed by a Health Professional.

The milk bank can be contacted on 07790940194. All Neonatal Units across Scotland hold a stock of milk which can also be accessed where the need is urgent.

Please refer to Management of Infants exposed to HIV in pregnancy.  The paediatrician on call must be notified as soon as the mother is admitted for delivery.

The baby should receive ART within 4 hours of birth. There is no requirement for the paediatrician to attend the birth or the baby to be admitted to the NNU where all is well.

Where there is a threatened or actual preterm labour, an assessment must be made by a consultant obstetrician on the most appropriate mode of delivery.

Check that the maternal viral load remains supressed. Where this is in doubt, the on-call consultant should be contacted.

The infant’s face and eyes should be cleaned at delivery. Uninterrupted skin to skin should be encouraged to allow the baby to complete the 9 steps and self-attach at the breast. This supports breastfeeding to get off to the best possible start.

The infant should be bathed as soon as is practicable. Care should be taken to avoid hypothermia. If an additional supplementary early feed is required where the baby doesn’t attach or the mother is unable to breastfeed, ante natal harvested colostrum is the first option.

Labour ward:

As soon as possible before transfer to the postnatal ward, complete a referral to the breastfeeding clinic via Badgernet. This will ensure IF advisors receive a quick referral and are able to provide support as soon as possible during inpatient stay.

Postnatal Care:

If a referral was not completed in Labour Ward, this must be done on admission to the post-natal ward.

Early breastfeeding support should be given in the ward until breastfeeding is established and the mother is feeling confident. Prior to discharge, the Community Infant Feeding Advisor should be informed by emailing breastfeeding clinic or calling 0141 532 7265. The Community IFA will link with the community Midwives and Health Visitor to give ongoing support.

In specific situations breastfeeding may need to be temporarily stopped – all cases should be discussed with the infant feeding team or relevant health professional.

A cracked or bleeding nipple, or mastitis has the potential to increase transmission to the infant through breastmilk. Evidence for this is from resource-limited settings⁸, and in some cases where women were not on ART. There are no data on HIV transmission and breast health problems in resource-rich settings where women are on ART.

Therefore, the recommendation is that breastfeeding from the affected side should temporarily stop. Breastmilk from the affected side should be expressed and discarded, and the baby fed on the unaffected breast. If this is not possible use stored breastmilk from the mother, or, if available, DHM.

If supplementary feeds are required antenatal harvested colostrum or EBM is the first option. Where not available, DHM is the next option. The introduction of formula milk should be avoided. Where formula milk is introduced, breastfeeding should be stopped as this increases the risk of transmission.

Once the breast health issue has resolved breastfeeding can resume 2 days after final resolution of the problem. (Note, any breastmilk expressed and stored for the 2 days prior to the breast health problem should be discarded).

Prior to discharge from the postnatal ward, expressing and storing breastmilk should be discussed. It is good practice to express at least once a day to create a store of EBM in case the infant cannot be put to the breast. Wherever possible, a breast pump will be given on loan for the duration of breastfeeding, ideally in the antenatal period but not for use until after delivery. Instruction on use of this pump will be given and flange size checked.

Early access to a breast pump will promote the continuation of exclusive breastfeeding when issues such as nipple damage, blocked ducts or mastitis arise.

A supply of breast milk can initially be maintained by hand expressing.

Once breastfeeding has established around one month of age, some expressed breastmilk can be introduced in a bottle but no later than 5 months of age in preparation for ceasing breastfeeding at 6 months. Individualised advice and support will be given via the Health Visitor or Community Infant Feeding Advisor.

If the mother develops acute gastroenteritis (vomiting and/or diarrhoea) there is the potential that she will not absorb her ART adequately.

In this situation it is recommended that breastfeeding should temporarily stop. Breastmilk should be expressed and discarded, and the baby fed on either stored breastmilk from the mother or DHM.

Breastfeeding can be resumed 48 hours after the gastroenteritis in a mother has resolved.

Acute gastroenteritis in the infant (vomiting and/or diarrhoea) may cause the gut lining to be damaged allowing an entry point for HIV. It will be difficult to establish when the infant’s gut has fully recovered.

The BHIVA guidelines therefore recommend that all breastfeeding ceases and the infant changes to formula.

It is important to recognise that a small posset or a mildly runny stool in a well infant is not the same as an acute episode of gastroenteritis when the infant will be unwell.

Where breastfeeding has to stop quickly, breast care and suppression of lactation must be managed to prevent breast discomfort, blocked ducts and mastitis. This should be supported with a plan from a Health Care professional.

Cabergoline⁹ is an option for suppression and is usually well tolerated and can be used for lactation suppression where milk supply is established (dose as follows):

250micrograms every 12 hours for 2 days (see the BFN for most up to date information).

Other advice may include:

• Wear a well supporting bra day and night
• Gentle massage
• Cold compress – apply for 15 – 20 minutes
• Simple analgesia like paracetamol and/or Brufen (anti-inflammatory)
• Expressing if very uncomfortable only to relieve – do not empty breast
• Reducing the time and frequency of expressing over a few days

The transition from exclusive breastfeeding to solids and formula should take place as quickly as possible and within 2 weeks.

It is important that the mother’s HIV load remain fully suppressed and she remains adherent to her ART.

Preparation for this period

• Encourage the baby to feed from a bottle from the second month of life (giving some feeds of EBM via bottle).
• As they reach 4-5 months of age try to encourage other ways of comforting the infant rather than putting them to the breast. For example, giving them a bottle of EBM before settling them for the night rather than breastfeeding; encouraging other people (e.g. their other parent) to give them feeds of EBM.
• As they reach around 5 months of age encourage the baby to take more feeds by bottle than breast – i.e. getting them used to taking feeds from bottles rather than directly from the breast.
• At 6 months, for the first few days introduce formula milk in a bottle and try to wean from the EBM/breastfeeding as quickly as possible.
• If possible, introduce solids once the infant is taking full formula feeds.
• Support the mother with ways to reduce engorgement over this period:
• Where necessary, express to reduce discomfort
• Decrease expression by one or two times each day over 1-2 weeks
• Use cold compress between expressing for comfort
• Wear a supportive bra

Infants born to HIV positive mothers should follow the routine primary immunisation schedule. Rotavirus may cause loose stools but, in this instance, continued breastfeeding is safe.

Information for antenatal expressing - patient information leaflet