Pregnancy and birth: information for people with HIV

Image: Anastasiia Chepinska/Unsplash

Key points

  • Being on effective HIV treatment and having an undetectable viral load prevents HIV transmission to your baby.
  • Some anti-HIV drugs are safer during pregnancy than others. If you are on dolutegravir and planning to conceive, you may be advised to switch medication.
  • Vaginal delivery is safe when your viral load is undetectable. Your doctor will consider a caesarean section if your viral load is detectable.
  • To be sure of preventing HIV, your baby will receive HIV medication called infant PEP within hours of birth.
  • U=U does not apply to breastfeeding and formula feeding is recommended in the UK. However, you may be able to breastfeed if you prefer.

Being on effective HIV treatment and having an undetectable viral load reduces the risk of transmission to your baby to 0.1%, or one in a thousand. (Without any sort of treatment or care, the risk of transmission is around 35%, or more than one in three.)

Health care during your pregnancy

A multidisciplinary antenatal team will look after you during your pregnancy. As well as your HIV doctor, you are likely to see other doctors, including an obstetrician (who focuses on pregnancy and childbirth) and a paediatrician (who focuses on children), as well as a specialist midwife (who focuses on pregnant women with health conditions). Other people you may see could include your GP, a community midwife, a health visitor, a doula (a trained companion who supports and advocates for women during pregnancy and birth), a peer support worker, a patient advocate, a counsellor, a psychologist or a social worker.

Your healthcare team is there to support you and connect you with other people who can help. It’s essential that you feel you can trust your healthcare team to provide the best possible care, to support you and to protect your interests. Staff should keep your HIV status confidential from people in your personal life, if that is what you wish. However, there may be some instances where they need to share your information with other healthcare professionals to ensure that you receive the appropriate health care.

UK guidelines for all pregnant women recommend that women have an antenatal care appointment as early as possible – ideally, before 13 weeks of pregnancy.

You will continue to have regular HIV clinic appointments during pregnancy. There will be additional tests and scans that all pregnant women receive. These include tests for Down’s syndrome and for liver function. Liver function can be an important indicator of several pregnancy-related health problems (unrelated to HIV). It is also important to monitor liver function if you have started HIV treatment while you are pregnant.

If you have just been diagnosed with HIV

Being diagnosed with HIV whilst pregnant can cause emotional and mental distress. Coming to terms with your diagnosis may take time. Knowing your status means you have done one of the most important things to prevent HIV from being passed on to your baby. You will be advised to start taking medication as soon as possible. If you do, it is likely that you will give birth to a baby without HIV.

HIV treatment during pregnancy

Taking HIV treatment will significantly reduce the risk of passing HIV to your baby in two ways.

Firstly, HIV treatment reduces your viral load so that your baby is exposed to less of the virus in the womb and during birth.

Secondly, some anti-HIV drugs can also cross the placenta and enter your baby’s body to prevent transmission.

Choice of anti-HIV medication

Your clinic will let you know if your medication is suitable during pregnancy. If your current anti-HIV medication is effective you will likely be advised to keep on taking it.

If you are starting HIV treatment while trying to get pregnant or during pregnancy, your doctors may recommend these medications that are particularly safe during conception and pregnancy:

  • tenofovir disoproxil/emtricitabine
  • abacavir/lamivudine
  • efavirenz
  • atazanavir/ritonavir
  • raltegravir.

Safety of anti-HIV medications

Women are often advised to avoid taking medications during pregnancy (particularly during the first three months). This is because of the potential risk of drugs interfering with the development of the baby. For this reason, it is important to let your HIV clinic know about all the medication that you are taking.

In the case of HIV treatment, however, the benefit of preventing HIV transmission to the baby outweighs any potential risks from using HIV treatment. The health benefits for the mother also outweigh these risks. Many women have taken HIV treatment during pregnancy and have given birth to healthy, HIV-negative babies.

Nonetheless, if you are trying to get pregnant or are in the early stages of pregnancy and you are taking dolutegravir (Tivicay, also included in Dovato, Juluca and Triumeq) it is important to discuss this with your doctor.

Glossary

viral load

Measurement of the amount of virus in a blood sample, reported as number of HIV RNA copies per milliliter of blood plasma. Viral load is an important indicator of HIV progression and of how well treatment is working. 

 

caesarean section

Method of birth where the child is delivered through a cut made in the womb.

undetectable viral load

A level of viral load that is too low to be picked up by the particular viral load test being used or below an agreed threshold (such as 50 copies/ml or 200 copies/ml). An undetectable viral load is the first goal of antiretroviral therapy.

depression

A mental health problem causing long-lasting low mood that interferes with everyday life.

antenatal

The period of time from conception up to birth.

When taken early in pregnancy, dolutegravir has been associated with a slight increase in neural tube defects (affecting development of the brain and spine). If you are on dolutegravir and planning to conceive, you may be advised to switch medication.

It is important to remember that the risk is only slightly higher. On dolutegravir, the chances of neural tube defects is 2 in 1000 births, whereas on other HIV treatment it is 1 in 1000 births. Taking folic acid is important because it can help to prevent birth defects.

If you are more than six weeks pregnant and already taking dolutegravir, you will be advised to stay on it. There are no safety concerns with dolutegravir after the sixth week of pregnancy.

Morning sickness and medication

Morning sickness – nausea and vomiting – in the first three months of pregnancy is common. If you are finding it difficult taking HIV treatment because of it, talk to your healthcare team. They will talk through different options with you.

If you also have hepatitis B or hepatitis C

Having hepatitis B or hepatitis C as well as HIV can make managing treatment and care during your pregnancy more complicated. Your antenatal care team should work closely with your hepatitis doctor so that you get the right care.

HIV and childbirth

In the UK, women are encouraged to think about birth delivery in advance, and to prepare a ‘birth plan’. This is a written record of your preferences for the birth – including where you would like to give birth, what pain relief you would like and who you would like to have with you as your birthing partner. It is important to let your antenatal team know whether your birthing partner knows your HIV status, so they can maintain your confidentiality if necessary.

Decisions about your care will sometimes depend on your viral load. When you are 36 weeks pregnant, you and your antenatal team can discuss whether you have a vaginal birth or a caesarean.

Having a vaginal delivery

A vaginal delivery is safe when a woman has an undetectable viral load (below 50 copies/ml). Once your labour has started, it should be managed in the same way it would be for a woman without HIV.

Some women consider water births. There is little evidence about the safety of water births for babies born to women with HIV, mainly because they are less common. If you would like a water birth and have an undetectable viral load, you should be supported to do so.

Having a caesarean delivery

A caesarean (c-section) may be necessary if your viral load is high as this will reduce the risk of transmission. You doctor will discuss this with you. Caesareans normally happen between 38 and 39 weeks of pregnancy. This may be called a planned caesarean section or a pre-labour caesarean section (known as a PLCS).

If your viral load is above 50 but below 400, the decision will be based on how quickly your viral load is decreasing, how long you’ve been on treatment, if you’ve had any trouble taking your medication and your views on caesarean sections.

If your viral load is above 400, your doctor will recommend a caesarean.

There may also be other medical reasons to have a caesarean. Your doctor will look at any non-HIV-related reasons for or against a vaginal delivery, including your views and preferences.

HIV treatment after your baby is born

After your baby is born, your doctor will review your HIV treatment and discuss options with you if you switched medication during pregnancy.

You may find it harder to take medication after having a baby. Your HIV clinic will be able to offer support, so discuss this with them.

Infant PEP

For the best chance of preventing HIV, your baby will need to take HIV treatment for between two and four weeks. The precise amount of time and medication will depend on your viral load when you were 36 weeks pregnant.

The medication is sometimes called infant post-exposure prophylaxis (infant PEP). Your baby must have this medication within four hours of birth.

Vaccinations

Your baby should receive the same immunisations (vaccinations) that are recommended for all babies born in the UK. Immunisations are especially important for the children of women with HIV. The NHS Choices website has more information about childhood vaccinations at www.nhs.uk/conditions/vaccinations.

Testing

Your baby will be tested for HIV several times in their first two years.

Glossary

viral load

Measurement of the amount of virus in a blood sample, reported as number of HIV RNA copies per milliliter of blood plasma. Viral load is an important indicator of HIV progression and of how well treatment is working. 

 

caesarean section

Method of birth where the child is delivered through a cut made in the womb.

undetectable viral load

A level of viral load that is too low to be picked up by the particular viral load test being used or below an agreed threshold (such as 50 copies/ml or 200 copies/ml). An undetectable viral load is the first goal of antiretroviral therapy.

depression

A mental health problem causing long-lasting low mood that interferes with everyday life.

antenatal

The period of time from conception up to birth.

If you aren’t breastfeeding, there will usually be three tests (at one-month, three-months and 18-months old) and then a final test around your baby’s second birthday.

If you breastfeed, you your baby will be tested every month while you are breastfeeding and for another two months after you stop breastfeeding. There will be a final test around your baby’s second birthday.

If your baby is diagnosed with HIV, your baby will be referred to a specialist clinic for children with HIV, so they can receive the care they need.

Testing your family

If you have found out you have HIV during pregnancy and you already have children, it is important that they are tested for HIV. Staff at your HIV clinic will discuss this with you.

Your HIV clinic can also support you to tell your partner and discuss how they can get tested for HIV.

Feeding your baby

U=U does not apply to breastfeeding. There is a small chance of HIV being passed on if you breastfeed, even if you are undetectable.

Bottle feeding (formula feeding) is recommended in the UK partly because safe clean water, bottle sterilising equipment and appropriate formula milk are widely available. In other parts of the world, this may not be the case.

However, if your viral load is undetectable and you agree to additional tests for you and your baby, you should be supported to breastfeed if you choose to do so. Talk to your HIV clinic before you start breastfeeding.

There’s more information about bottle feeding and breastfeeding on another page.

Your emotional wellbeing after you have your baby

After giving birth, you are likely to feel many different emotions. The change in your hormone levels, your body recovering and change in your routine can be a big shock.

It is common that women feel mildly depressed during the first week after childbirth. This is often called the ‘baby blues’. Symptoms can include feeling emotional, bursting into tears for no apparent reason, feeling irritable or touchy, low mood, anxiety and restlessness.

These symptoms are normal and usually only last for a few days.

Postnatal depression is a much deeper and longer-term depression than the baby blues. It affects one in ten women. It often starts two to eight weeks after the birth, though sometimes it can happen up to a year after the baby is born.

You will be given an assessment for postnatal depression shortly after your baby is born and a few months afterwards.

Postnatal depression affects women in different ways. You may feel:

  • down, upset or tearful
  • restless, agitated or irritable
  • guilty, worthless and down on yourself
  • empty and numb
  • isolated and unable to relate to other people
  • finding no pleasure in life or things you usually enjoy
  • a sense of unreality
  • no self-confidence or self-esteem
  • hopeless and despairing
  • hostile or indifferent to your partner
  • hostile or indifferent to your baby
  • suicidal.

Experiencing postnatal depression does not mean you won’t be a loving, supportive and caring parent, but motherhood may feel more of a challenge.

If you think you have postnatal depression, there is a lot of support available. Reach out to your health visitor or GP. If you don’t feel up to making an appointment, ask your loved ones to do it on your behalf. If you have been diagnosed recently, talking about HIV with people you trust can reduce levels of postnatal depression.

Pregnancy loss

Miscarriage and stillbirth is more common among women with HIV than in HIV-negative women, although the reasons are unclear. Losing a baby during pregnancy is a major loss for parents. Support is available from organisations such as The Miscarriage Association, SANDS, and Tommy’s, as well as 4M

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