British HIV Association (BHIVA) guidelines set out the treatment and care people with HIV in the UK can expect to receive. Its most recent guidelines on HIV treatment were published in 2015 while specific guidelines for pregnant women were published in 2012.
Without any sort of treatment or care, the chance of a woman with HIV passing it on to her baby is between 35 and 40%. With the right treatment and care, this risk can be much reduced.
In the UK, because of high standards of care, the risk of HIV being passed from mother to baby is very low. For women who have been diagnosed and who receive the right advice, treatment and care, the risk is below 1%. For women who are on effective HIV treatment and who have an undetectable viral load when their baby is born, risk of transmission to their baby is 0.1%, or one in a thousand.
Health care during your pregnancy
A multidisciplinary antenatal team will look after you during your pregnancy. This is a team of medical and other professionals with a mix of skills and experience. Your care will still be offered at your HIV clinic, but as well as your HIV doctor and clinic staff, you are likely to see an obstetrician (a doctor specialising in pregnancy and childbirth), a specialist midwife and a paediatrician (a doctor specialising in the care of children). Other people you may see, depending on your wishes or needs, could include a peer support worker, a community midwife, a counsellor, a psychologist, a social worker or a patient advocate.
UK guidelines for all pregnant women recommend that women have an antenatal care appointment as early as possible – ideally, before 13 weeks of pregnancy. This allows plenty of time to ensure that both mother and baby are in the best possible health. Good antenatal care will also help reduce the risk of passing on HIV and provide support to you in making important choices during your pregnancy. Your healthcare team and support organisation can help you adhere to any treatment you need to take and answer questions you may have about your health and that of your baby. They can provide support and advice on your eligibility for free NHS treatment, as well as help with any other issues you might have, such as housing, finances, domestic violence or alcohol and drug use.
It’s very important that you feel comfortable with, and confident in, the healthcare team looking after you during pregnancy and when your baby is born. The team should have the right mix of experience and skills to meet your needs.
They should do an assessment of those needs when you first find out you are pregnant, so they can work with you to provide the support you need. This should include assessing whether, for example, you might be at risk of depression during pregnancy or after your baby is born.
As well as having the right mix of skills, good communication between the members of the team is important. And it’s essential that you feel you can trust the team to provide the best possible care, to support you and to protect your interests. This includes keeping your HIV status confidential and managing any disclosure carefully, and with your involvement.
Health monitoring during pregnancy
During your pregnancy, you will continue to have regular HIV monitoring as usual.
You will have your liver function tested regularly during pregnancy, as a change in 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.
You will also have the tests and examinations that all pregnant women should have as part of their antenatal care in the UK. These include:
- ultrasound screening. You are likely to have at least two ultrasound scans during your pregnancy. The second of these (usually done when you are between 18 and 21 weeks pregnant) is sometimes called the ‘anomaly scan’ because it looks for certain physical problems in your baby.
- a combined screening test for Down’s syndrome, which usually happens when you are between 11 and 14 weeks pregnant. This test involves an ultrasound and blood tests.
There are some situations where a pregnant woman may be offered a screening test called an amniocentesis. This procedure uses a long, thin needle inserted into the womb to remove some amniotic fluid, the liquid that surrounds the baby, for testing. Because this process involves a needle piercing the skin and going into body tissue, wherever possible, women with HIV should only have an amniocentesis once they are on HIV treatment and have an undetectable viral load. If you don’t have an undetectable viral load and it’s not possible to wait until you do, you will start an HIV treatment combination that includes raltegravir (Isentress) immediately, and be given a single dose of nevirapine (Viramune) two to four hours before the procedure is done. These drugs can bring your viral load down quickly.
Reducing the risk of passing HIV on to your baby
Antenatal testing for HIV (for women not yet diagnosed), early diagnosis and taking HIV treatment all help to reduce the risk of a woman passing HIV on to her baby.
There are two ways in which HIV treatment reduces the risk of passing HIV on to your baby.
Firstly, HIV treatment reduces your viral load so that your baby is exposed to less of the virus while in the womb and during birth.
Secondly, some anti-HIV drugs can also cross the placenta and enter your baby’s body where they can prevent the virus from taking hold. This is also why newborn babies whose mothers are HIV positive are given a short course of anti-HIV drugs (this is called infant post-exposure prophylaxis, or infant PEP) after they have been born.
A number of factors can increase the risk of passing on HIV to your baby. These include:
- Having an HIV-related illness, such as an opportunistic infection like pneumocystis pneumonia.
- Having a high HIV viral load.
- Having a sexually transmitted infection. You should have a sexual health screen if you are diagnosed with HIV when you are pregnant, or when you first become pregnant if you have already been diagnosed with HIV.
- Developing resistance to your HIV treatment through not taking it as prescribed.
- Using recreational drugs, particularly injected drugs, during pregnancy.
- Your waters breaking four or more hours before delivery if you do not have an undetectable viral load (that is, your viral load is over 50 copies/ml).
- Having an untreated sexually transmitted infection when you give birth. Other conditions, such as bacterial vaginosis, can also increase the risk of passing on HIV to your baby.
- If you have a vaginal delivery (rather than a caesarean delivery) when you have a detectable viral load.
- If you have a premature baby.
- If you breastfeed your baby. To avoid passing HIV to your baby, it is safest to formula feed because breast milk can contain virus. Help should be available with getting formula milk and feeding equipment. Ask your healthcare team about this and how to protect your confidentiality if a friend or family member asks why you are not breastfeeding.
HIV treatment during pregnancy
When HIV treatment is used during pregnancy, it protects your health as well as preventing HIV being passed on from you to your baby during pregnancy and birth. Taking HIV treatment is the most important thing you can do to prevent HIV being passed on to your baby.
Having an undetectable viral load greatly reduces the risk of HIV transmission. While you are pregnant, decisions about your care will sometimes depend on your viral load, and whether or not it is undetectable.
If you’re not yet taking HIV treatment
If you’re not yet taking HIV treatment, your doctor will recommend that you begin treatment as soon as you can. HIV treatment guidelines, both in the UK and elsewhere in the world, now recommend that all people with HIV – including pregnant women – should take HIV treatment.
As well as reducing the risk of passing HIV on to your baby or to a sexual partner, HIV treatment will strengthen your immune system, reduce the amount of HIV in your body and prevent illnesses from occurring. The sooner you start to take HIV treatment, the sooner you can benefit from it.
The closer you get to your delivery date, the more important it is to have an undetectable viral load. If you start treatment sooner, you will have more time to bring your viral load down to an undetectable level. If you have a high viral load, your doctor may advise that starting treatment without delay is especially important.
However many pregnant women have morning sickness – nausea (feeling sick) and vomiting (being sick) – in the first three months of pregnancy. If you are less than 12 weeks pregnant you could talk to your doctor about waiting to start HIV treatment until you are 13 to 14 weeks pregnant, when morning sickness generally stops. This is because some anti-HIV drugs can also make you feel sick during the first few weeks of treatment. If you do need to start HIV treatment sooner, your doctor can prescribe other medication to deal with sickness, if necessary.
To prevent HIV being passed on, you should definitely start HIV treatment by the time you are 24 weeks pregnant.
In the past, women who had high CD4 counts sometimes stopped taking HIV treatment after giving birth. We now know that it’s better for your health to continue taking HIV treatment.
If you are on HIV treatment when you become pregnant
If you are already taking HIV treatment, in most cases you can keep taking the same anti-HIV drugs during your pregnancy.
This is still the case if you are taking efavirenz (Sustiva, also in Atripla). Previous treatment guidelines recommended that women on efavirenz should change to another drug, as it was thought there may be a connection between efavirenz and birth defects. Later evidence doesn’t support this advice, so the 2012 guidelines say you can continue to take efavirenz if it is working for you.
Some women find that they develop some side-effects from their HIV treatment during pregnancy, such as heartburn, even though they are on the same drugs they have taken for some time. Talk to your doctor or pharmacist about how best to deal with these side-effects.
If you are more than 28 weeks pregnant
If you are diagnosed with HIV when you are more than 28 weeks pregnant, you will be advised to start HIV treatment straight away.
If you have a very high viral load (more than 100,000 copies/ml), you are likely to start on a treatment combination containing three or four drugs, including raltegravir (Isentress). This is because raltegravir is very effective at reducing viral load quickly.
You will also be given a single dose of nevirapine, as well as zidovudine (probably intravenously; that is, through a drip) throughout your labour and delivery.
If you go into labour prematurely (before the full term of your pregnancy), a double dose of another drug, tenofovir (Viread), may be added to your treatment combination. If your baby is born very prematurely, they may not be able to absorb HV treatment for the first few days after they are born. The tenofovir provides extra protection for your baby after they are born.
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 you get the right treatment and care for your situation.
HIV treatment after your baby is born
It’s recommended that you continue to take HIV treatment after your baby has been born. It will continue to protect your health and lower the risk of passing HIV on to a sexual partner.
Some research has shown that adherence levels go down in women after they have had a baby. It’s very important that you continue to take each dose of your treatment at the right time and in the right way to protect your health. Discuss any problems you may have taking your treatment with your healthcare team. They will be able to offer support.
Safety of treatment to prevent mother-to-baby transmission
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.
In the case of HIV treatment, however, the benefit of preventing HIV being passed on from a mother to her baby outweighs any potential risks from using HIV treatment. Many women have taken HIV treatment during pregnancy and have given birth to healthy, HIV-negative babies.
There’s some evidence of a slightly increased risk of having a premature, or low birth-weight baby if the mother takes anti-HIV drugs during pregnancy. This is particularly the case if the mother takes a protease inhibitor, and if she is on treatment during the first three months of her pregnancy. However, this is a controversial issue and other evidence suggests that taking anti-HIV drugs does not cause premature delivery. In the UK, where good care is available, premature delivery or low birth weight won’t necessarily mean your baby has longer-term health problems. Your baby will be carefully monitored to ensure he or she is healthy.
The anomaly scan pregnant women normally have between weeks 18 and 21 of a pregnancy can check for possible physical problems in your baby’s development. Information collected about HIV treatment and some abnormalities in babies has not shown an increased risk with any anti-HIV drugs used currently.
HIV and childbirth
In the UK, women are encouraged to think about labour and the birth before they go into labour, and to prepare a ‘birth plan’. A birth plan is a written record of your preferences for the birth – including things like where you would like to give birth, what pain relief you would like and who you would like to have with you. It can be helpful to let your antenatal team know whether your birthing partner knows your HIV status, so they can maintain your confidentiality if necessary.
For women with HIV, your own health and HIV treatment will be a key factor in your birth plan, as these will affect your choice of delivery. When you are 36 weeks pregnant, you and your antenatal team can discuss the type of delivery you might have (that is, how your baby might be born). Whether or not you have an undetectable viral load will be an important factor in that decision. Ideally, your viral load will be undetectable at 36 weeks of pregnancy.
Having a vaginal delivery
If you are on combination HIV treatment and you have an undetectable viral load at 36 weeks of pregnancy, you can plan to have a vaginal delivery. The latest evidence shows that having a vaginal delivery does not increase the risk of HIV transmission when a woman has an undetectable viral load.
If you have had a caesarean in the past, but you have an undetectable viral load, you can also plan to have a vaginal delivery. (This is often called a VBAC – vaginal birth after caesarean.)
There may be medical reasons unrelated to HIV that mean it would be safer for you or your baby for you 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.
If it’s been decided that a vaginal delivery is suitable for you, once your labour has started, it should be managed in the same way it would be for a woman without HIV. This means you may be able to choose the option of having your baby in a midwifery-led birth centre, or at home, if there are no other reasons why this wouldn’t be suitable. There do need to be facilities for testing your baby for HIV and starting him or her on anti-HIV drugs very soon after the birth, wherever your baby is born.
If a baby is breech, it means that she or he is lying with their bottom downwards. This makes a vaginal delivery more complicated. A procedure called external cephalic version (ECV) can be used to turn the baby. ECV can be performed safely in women with HIV. It is normally carried out after 36 weeks of pregnancy.
There are monitoring methods and procedures sometimes used during labour and vaginal deliveries that are more ‘invasive’; that is, they may break the skin or other body tissue. These include:
- amniotomy. This is where the amniotic sac surrounding the baby, which contains fluid, or ‘waters’, is ruptured by hand or by using a small tool.
- foetal scalp monitoring. A small clip is placed on the baby’s head to monitor their heart rate.
- using instruments such as forceps or a ventouse (vacuum extractor) to help deliver the baby.
- episiotomy. The doctor or midwife makes a small cut in the vagina to help the baby to be born.
In the past, it was recommended that these procedures weren’t used for women with HIV because there was, in theory, a risk of HIV transmission. However, evidence now shows little or no risk, so these procedures can be used safely if you have an undetectable viral load.
Having a caesarean delivery
If you have a viral load of 400 copies/ml or above when you are 36 weeks pregnant, your doctor will recommend you have a pre-labour caesarean section (PLCS).
If you have been taking zidovudine monotherapy (HIV treatment with one drug), you will have a PLCS, even if you have an undetectable viral load.
You are likely to have the PLCS at 38 or 39 weeks of pregnancy. (It may be decided that you need a caesarean for another, non-HIV-related reason. If that is the case, doctors will discuss with you when this should happen.)
If you have a viral load over 10,000 copies/ml, you will be given zidovudine intravenously while your baby is being delivered.
If you have been on zidovudine monotherapy during your pregnancy, you will receive zidovudine during your caesarean section. You can carry on taking it orally (by mouth), as you have been doing, or have it intravenously.
Premature (early) labour
The baby develops inside a bag of fluid called the amniotic sac. When the baby is ready to be born, the sac breaks and the fluid drains out through the vagina (often referred to as the waters breaking).
If your waters break before you go into labour, your healthcare team will follow national guidelines on the management of induction and premature labour. These set out the treatment and care for all women who go into premature labour.
If this happens, your baby should be delivered as soon as possible. This is because there is an increased risk of you or your baby developing an infection after your waters have broken.
If your viral load was undetectable at your last viral load test, your labour will be induced (started artificially) immediately.
You will be given antibiotic treatment immediately if there is any sign that you are developing an infection.
If your viral load was detectable, but under 1000 copies/ml, your doctor will look at various factors to decide whether you should have a caesarean section immediately. These include how long you have been on treatment and how well you have been taking it, and whether your viral load has been falling over time. They will also look at any non-HIV-related reasons for or against a vaginal delivery, and talk to you about your views and preferences.
If your viral load was over 1000 copies/ml, you will have a caesarean section immediately.
If your waters break before you go into labour, and you are between 34 and 37 weeks pregnant, your doctor will follow the same processes, making a decision based on your viral load. You will also be given antibiotic drugs to prevent your baby getting a bacterial infection called group B streptococcus (GBS). All women who go into labour before they are 38 weeks pregnant are offered this treatment, called GBS prophylaxis.
If your waters break when you are less than 34 weeks pregnant, doctors will try to bring your viral load down as quickly as possible, if necessary.
You may be given injections of drugs called steroids. These help to develop your baby’s lungs so that they are better able to breathe after they are born. This is a treatment that all pregnant women may be offered if their baby will be born early.
After your baby is born
HIV treatment and testing for your baby
For the best chance of preventing HIV, your baby will need to take HIV treatment for a short period after he or she is born. This is sometimes called infant post-exposure prophylaxis, or infant PEP. What sort of treatment your baby has will depend on the HIV treatment you have taken during your pregnancy.
If your viral load was undetectable when you were 36 weeks pregnant or when you gave birth, or if you have taken zidovudine monotherapy, your baby will be given zidovudine monotherapy as well. This means he or she will take this single anti-HIV drug, usually twice a day, for four weeks, starting within four hours of being born.
If you didn’t have an undetectable viral load at 36 weeks of pregnancy or when you gave birth, your baby should be started on HIV treatment quickly – ideally, within an hour, but at least within four hours of being born. The recommended treatment in this situation is a three-drug combination. Your baby will take HIV treatment as infant PEP for four weeks.
If you have not been on HIV treatment at all during your pregnancy, and your baby is less than three days old (72 hours), your baby should be started on HIV treatment immediately. Again, the recommended treatment in this situation is a three-drug combination, taken for four weeks.
Not all anti-HIV drugs available are considered suitable for use in babies. Which anti-HIV drugs are used in a three-drug combination can also depend on any treatment you have been on (because your baby will have been exposed to those drugs in the womb). Doctors will use the best available evidence to help them choose the right combination for your baby.
If the first HIV test your baby has suggests they may have HIV, or if your viral load was more than 1000 copies/ml at 36 weeks of pregnancy or when your baby was born, your baby will be given antibiotic treatment to stop him or her developing PCP, a type of pneumonia. This treatment is often referred to as PCP prophylaxis.
Your baby will be tested for HIV several times in his/her first 18 months. The first time will be a few hours after your baby is born, and then again at 6 weeks old and at 12 weeks. These first tests are looking for the virus itself to see if it is present in the baby’s blood. If all these tests are negative, and you are not breastfeeding your baby, you will be told your baby is HIV negative (does not have HIV) at 12 weeks.
Finally, your baby will have an antibody test at 18 to 24 months. HIV antibodies (proteins that are produced by our body in response to infections) are passed from mother to baby via the umbilical cord during pregnancy. This is not the same as HIV being passed on, and does not mean your baby has HIV. These antibodies can last for up to 18 to 24 months, so testing the baby at 18 to 24 months is final confirmation that your child does not have HIV.
If any of the tests have a positive result, the test will be done again to confirm the result.
If your baby is diagnosed with HIV, your baby will be referred to a specialist clinic for children with HIV, so he or she can receive the care they need. They will be given antibiotic treatment to stop them developing PCP, a type of pneumonia (this is often referred to as PCP prophylaxis).
Testing other children
If you have found out you are HIV positive during this pregnancy, it is important to have other children you have tested for HIV, unless you can be sure that you were HIV negative after any previous children were born and had finished breastfeeding. Your healthcare team will discuss this with you. If your children have no symptoms of illness, they could be tested together with your new baby in the weeks after he or she is born.
Feeding your baby
Breastfeeding carries a risk of passing on HIV on to your baby. The risk of transmission varies, depending on your own state of health, whether you are on HIV treatment, your HIV viral load, how long you breastfeed for, and whether the baby receives any food or water in addition to breast milk. Studies have shown that ‘mixed’ feeding makes the transmission of HIV more likely.
In the UK and other countries where women can formula feed safely, you are advised only to feed your baby with formula milk from birth. This is different to advice in other parts of the world, where breastfeeding is recommended for women with HIV. This is partly because safe clean water, bottle sterilising equipment and appropriate formula milk may not be available. In addition, in many poorer parts of the world, breastfeeding may be lifesaving as it can significantly reduce infant mortality (deaths) by protecting against dangerous infections in infants and babies. This is not the case in the UK where babies who are formula fed also grow up to be strong and healthy. Ask your healthcare team or support organisation if you have any questions or if you have difficulty meeting the cost of formula and the equipment needed, as financial and other help may be available.
You will be offered a tablet after your baby is born, which stops milk being produced so that your breasts are not uncomfortable.
Detailed advice and support on how to feed your baby safely is available from your healthcare team, as well as from support organisations.
Some women can be disappointed that they cannot breastfeed. They may also find it difficult to explain to family and friends why they are not breastfeeding, while still keeping their HIV status confidential. If these issues affect you, and you would like support in dealing with them, you can talk to other mothers with HIV about how they have successfully done this.
There are many reasons why HIV-negative women in the UK do not breastfeed. You should not feel that you have to give anyone a reason why you are not breastfeeding. However, if you would like to give an explanation, reasons why people do not breastfeed include:
- Choosing not to breastfeed for personal reasons (for example, it allows a partner to share night-time feeding duties).
- Breast milk not ‘coming down’.
- The baby not being able to suck properly.
- Having painful nipples and/or breasts (including inflammation of the breast, a condition called mastitis), or blocked milk ducts.
The support organisation Positively UK has a group of trained peer mentor mothers who can support you around this issue. Your healthcare team or support organisation can also help.
Feeding time can still be an occasion for bonding with your baby. Holding your baby ‘skin to skin’, with no clothes between you, while you are feeding him or her, can help you feel close to your baby and is recommended, particularly in the early days.
It is very important that you discuss any difficulties you have with formula feeding with your healthcare team as soon as possible (even during your pregnancy). You should feel that you can discuss feeding your baby with your team without any fear of being judged. Healthcare teams know that this can be a very difficult time and want to be able to provide support and practical help.
See the British HIV Association guidelines on infant feeding for more information (www.bhiva.org).
Having your baby immunised
Your baby should receive the same immunisations (vaccinations) as those that are recommended for all babies born in the UK. You can find out more about childhood vaccinations on the NHS Choices website at www.nhs.uk/conditions/vaccinations.