HIV and women – having children

Women living with human immunodeficiency virus (HIV) in Australia, or women whose partner has HIV infection, may wish to have children but feel concerned about the risk of transmission of the virus to themselves (if their partner is HIV-positive) or to the baby.

If you are living with HIV or your partner is HIV-positive, you can plan pregnancy or explore other ways to have children, depending on your wishes.

Talk with an HIV specialist doctor before you become pregnant. The right specialised treatment and medical care can reduce the risk of passing HIV to your unborn child to less than 1%.

Without treatment, up to 35% of babies born to women living with HIV may contract the virus.

What is HIV and how is it transmitted?

HIV is a virus that can weaken the immune system to the point that it is unable to control some infections.

HIV infection is not the same thing as AIDS. AIDS (acquired immune deficiency syndrome) is the most advanced stage of HIV infection, when the immune system is at its weakest and a person has several specific illnesses.

AIDS is now very rare in Australia, as HIV treatments are highly effective at protecting the immune system from the virus.

Most people living with HIV in Australia can expect to live long, healthy lives without ever developing AIDS, if they are on effective treatment.

In Australia, HIV is commonly transmitted through:

• Anal or vaginal sex without the use of condoms.
• Having unprotected sex without using other prevention methods – like PrEP (an HIV prevention drug) or ‘undetectable viral load’ or U=U (when a person with HIV has very low levels of the virus in their body).
• Sharing needles, syringes and other injecting equipment.

People who are HIV-positive and on treatment and have achieved and maintained an undetectable viral load cannot transmit HIV sexually.

For people who do not have HIV, regular use of condoms is the easiest way to prevent HIV.

For those at higher risk of HIV, PrEP (pre-exposure prophylaxis) is a medication that, when taken as prescribed, is up to 99% effective at preventing the virus.

HIV during pregnancy and childbirth

Women living with HIV who are on treatment and have a stable undetectable viral load are extremely unlikely to transmit HIV to their baby during pregnancy and childbirth. There is a 1 in 1000 chance of transmitting HIV to the baby during pregnancy and delivery, when a woman is on antiretroviral treatment and has a viral load below 50 copies/ml (undetectable).

HIV-positive women who are on treatment and have stable undetectable viral load, have a 1-2% chance of transmitting HIV to their baby if they breastfeed for 12 months.

So, although it is unlikely that a woman will transmit HIV to her baby when breastfeeding it is currently advised not to breastfeed.

HIV and planning a family

Deciding to have a baby is a big decision, but for a woman who is HIV-positive, or who has a male partner with HIV, planning a family requires extra consideration.

If you are in this situation, seek professional advice and find out as much as you can before you become pregnant. It may help to talk the issues through with:

• The doctor who is treating you.
• Your HIV specialist, obstetrician or family planning specialist.
• The Chronic Viral Illness (CVI) Clinic at Melbourne’s Royal Women’s Hospital – (you’ll need a referral from your local doctor). CVI clinic staff are experienced and knowledgeable about HIV in pregnancy and can provide expert advice and assisted reproductive technology options for serodiscordant couples (couples where one partner has HIV and the other does not).
• A counsellor who specialises in this area.

Concerns HIV-positive mothers may have

Medical advances have made the risk of HIV transmission to a baby very low. For a woman who is HIV-positive, you may have extra concerns such as:

• Worries about passing on HIV your baby.
• Feelings of grief – such as not being able to breastfeed. (Mothers who are HIV positive are advised not to breastfeed their baby.)
• Concerns about the safety of the treatment you will receive during pregnancy and the treatment your baby will be given after birth.
• Fears around your privacy – some of the strategies and treatments to keep you and your baby safe, may make it obvious to others you have HIV. Your HIV status is strictly confidential.
• Feelings that the whole experience of becoming a mother will be overshadowed by managing the risk of HIV.
• Concerns about how to look after yourself in pregnancy and how to keep your baby safe. These feelings are more complicated for a woman with HIV, and can add stress during and after pregnancy.
• Worries your pregnancy might worsen the progress of your HIV – there is no evidence that pregnancy does this.
• Concerns that HIV may cause your baby to have birth defects. HIV does not cause birth defects.

There is excellent support for HIV-positive women living in Victoria who are considering pregnancy. See the ’where to get help’ section for more information.

Telling health professionals about your HIV status

It is important to tell your doctor, obstetrician or midwife about your HIV status as early as you can (even if you are still deciding whether to have a baby).

Telling your health team, helps to talk through any concerns you may have and ensure you receive treatment before that suits your needs, and is safe throughout pregnancy and after your baby is born.

Also, if your medical team knows about your HIV status, they can take steps to minimise the risk of accidental transmission during any medical procedures.

Testing positive for HIV during pregnancy

HIV testing of women in early pregnancy is now routine in Australia. Testing should be done with your consent and is offered during your first set of antenatal tests.

If you receive a positive test result, be reassured that many people with HIV live a full and active life. The risk of HIV transmission to your child is very low, given appropriate treatment.

Support is available through:

• Positive Women Victoria
• The Alfred Victorian HIV Services
• Royal Woman’s Hospital - Chronic Viral Illness Clinic.

HIV and getting pregnant

If you are HIV-positive and become pregnant, or would like to have a baby, it is strongly recommended that you talk to specialists.

If you live in Victoria, The Victorian HIV Service at the Alfred Hospital (no referral from your doctor is necessary) and the Chronic Viral Illness Clinic at the Royal Women’s Hospital can provide you with more information. (You will need to be referred by a doctor such as your local GP.)

At the Chronic Viral Illness (CVI) Clinic at the Royal Women’s Hospital you can discuss your options with doctors who specialise in HIV and reproductive health.

This clinic specialises in helping serodiscordant couples (where one partner has HIV and the other does not) to conceive safely.

Timing of sex to coincide with ovulation can be discussed with a healthcare provider to increase your chances of getting pregnant while reducing the risk of passing on the virus.

Effective treatments can reduce HIV transmission

When someone with HIV is on antiretroviral treatment (ART) and consistently has very low levels of virus (also known as undetectable viral load) they are not infectious and cannot sexually transmit the virus.

This may be true for sexual transmission during pregnancy, but researchers are still gathering more evidence before they can be confident it is true for transmission during pregnancy, labour and delivery, and during breastfeeding.

New preventative medications – Pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP) can be taken by HIV-negative people who are at risk of getting HIV.

As long as the HIV-positive partner maintains a stable undetectable viral load and these medications are taken strictly as prescribed, HIV transmission to a negative partner is not possible.

Speak to your treating doctor if you would like to explore these newer prevention drugs.

Getting pregnant when you are HIV-positive

If you want to conceive, are an HIV-positive woman with an HIV-negative male partner, you can choose artificial insemination. You can do this at home using your partner’s semen, rather than having unprotected sex.

To improve your chances of becoming pregnant through artificial insemination it is best to do it at the most fertile time in your menstrual cycle.

Learning about fertility awareness will help you to know when you are most likely to conceive.

Speak to your GP, HIV doctor, sexual health nurse, or fertility specialist.

Getting pregnant when a male partner is HIV-positive

If a male partner is HIV-positive, a procedure called ‘sperm washing’ can be used to conceive. During this procedure a machine separates sperm cells (which don’t carry HIV) from the seminal fluid, which can carry the virus. The washed sperm is then used to fertilise the woman’s egg using a special catheter inserted into the uterus.

If the male partner is on effective treatment and has a stable undetectable viral load, there is no risk of HIV transmission.

In-vitro-fertilisation (IVF) may also be an option.

Getting pregnant when both parents have HIV

Seroconcordant couples (or couples where both partners have HIV), can have an HIV-negative child. If both partners are on treatment, the risk of either partner transmitting HIV to their baby is almost zero.

If you are a seroconcordant couple and you are thinking of becoming pregnant it is important to speak with an obstetrician and an HIV specialist to minimise the risk of transmitting HIV to your baby.

HIV and pregnancy

Talk to your doctor about your treatment. It is important to know that not all antiretroviral medications are safe during pregnancy, and some small treatment changes may be required.

Pregnancy can be relatively safe for an HIV-positive mother and her baby – if HIV transmission reduction strategies are followed.

Reducing HIV transmission risk during pregnancy

For HIV-positive women, ways to reduce the risk of transmission include:

• Taking antiretroviral medications before conception to reduce your viral load (the amount of virus in the fluids in your body). The lower the viral load, the lower the risk of transmission to your unborn baby.
• Start antiretroviral HIV treatment as soon as you are diagnosed with HIV (this will also help to optimise your overall health).

Being on treatment and having a low, or undetectable, viral load improves your immune system and health throughout pregnancy.

HIV-positive pregnancy today, with specialised care, is the same as HIV-negative pregnancy. Pregnancy does not make HIV progress any faster.

Giving birth when you’re HIV-positive

In Australia, women who are HIV-positive and receiving treatment under the care of an HIV specialist and obstetrician, can give birth vaginally or by caesarean section.

Birthing plan options are based on women’s individual health needs.

Reducing HIV transmission during labour

Ways to reduce HIV transmission during birth include:

• Avoiding procedures in labour that may scratch or cut the baby’s skin, wherever possible (for example, foetal scalp monitoring).
• Giving antiretroviral medications to the newborn for around 4 weeks after birth.

Caesarean delivery is recommended if a woman:

• Has a detectable viral load, (particularly if it is over 1000).
• Is not taking antiretroviral treatment.
• Experiences obstetric delivery complications (such as the baby being in the breech position).
• Has other medical illness complications.

HIV and your baby’s health

After your baby is born, you may have concerns about feeding, protecting your baby against HIV and their transmission risk.

Feeding your baby

Although there is a low risk of transmission to your baby, if you are HIV-positive and have a stable undetectable viral load you should formula feed your baby.

Current advice is not to breastfeed as no data is available to confirm there is no transmission risk. Breast milk may contain HIV.

Some risks around breastfeeding and HIV transmission include:

• Ensuring the mother has a stable undetectable viral load – this can be monitored by having regular blood tests.
• The absorption of HIV medication may reduce if the mother has an upset stomach.
• Cracked nipples or mastitis.
• Lack of strong evidence on HIV viral load in breast milk.

Many women can feel pressured to breastfeed and you may experience grief about not being able to breastfeed. It is important to gain support by speaking to supportive counsellors or other HIV-positive women who can give helpful advice.

Also, women who are HIV-positive do not need to disclose their HIV status or justify their reason for not breastfeeding to every nurse, midwife, lactation consultant or doula, or during breast feeding education.

Babies with HIV-positive mothers receive prevention treatment

Babies born to women with HIV will receive antiretroviral treatment for a 2 to 6-week period after birth. This treatment is known as PEP (or post-exposure prophylaxis), and significantly decreases the chance of your child getting HIV.

Your baby will also be regularly tested for HIV, usually until they are 18 months old. Testing will involve a combination of antibody and PCR (polymerase chain reaction) tests.

It is important that babies exposed to antiretroviral medication continue to be monitored. They are generally considered HIV negative by 3 months of age if they are not breastfed.

Babies born to HIV-positive women in Victoria are referred for specialised paediatric support, usually to The Royal Children’s Hospital or Monash Medical Centre.

What if my baby is HIV-positive?

With excellent health care, the mother-to-child HIV transmission rate is almost zero.

In the very rare case, your baby is HIV-positive, there are many supportive professionals and organisations that can help you during this difficult time.

You can expect welcoming, non-judgemental and compassionate care for yourself and your baby.

Medical care for babies with HIV is highly specialised. Early diagnosis means that a baby can begin effective treatment and have every chance for a long, healthy life.

Other ways for HIV-positive women to have children

If you decide not to get pregnant because you or your partner have HIV, there are other ways to become a parent. You may like to explore other options such as foster care, permanent care and adoption.

Surrogacy is an option for some women, however it is complex and has very specific Victorian guidelines.

Managing illness as a parent

Although medical advances now allow people with HIV to live full, healthy lives, you may have times where you or your partner is unwell or needs medical care.

As with any longer-term illness, this can impact on your ability to earn an income, manage a household or raise children.

Living with chronic illness can be a challenge and sometimes families need extra support. Trying to sort things out on your own can make life seem overwhelming. Don’t be afraid to ask for help from expert organisations that support people with HIV.

Where to get help

• Your GP (doctor)
• Your local community health service
• Melbourne Sexual Health Centre Tel. (03) 9341 6200 or 1800 032 017 or TTY (for the hearing impaired) (03) 9347 8619
• Get PEP If you believe you may have been exposed to HIV. Tel. 1800 889 887
• Living Positive Victoria Tel. (03) 9863 8733
• Positive Women Victoria Tel. (03) 9863 8747
• Victorian HIV Service, Alfred Health Tel. (03) 9076 5436
• Positive Living Centre Tel. (03) 9863 0444 or 1800 622 795 (for country callers)
• Multicultural Health and Support Service, Centre for Culture, Ethnicity and Health Tel. (03) 9418 9929
• Thorne Harbour Health (formerly Victorian AIDS Council) Tel. (03) 9865 6700 or 1800 134 840
• Equinox Gender Diverse Health Centre Tel. (03) 9416 2889
• PRONTO! Tel. (03) 9416 2889
• Sexual Health Victoria – comprehensive sexual and reproductive health services for people of all ages. Tel. 1800 013 952 or (03) 9257 0100
• Ballarat Community Health Sexual Health Clinic Tel. (03) 5338 4500
• Bendigo Community Health Sexual Health Clinic Tel. (03) 5434 4300 Or (03) 5448 1600
• Gateway Health Clinic, Wodonga Tel. (02) 6022 8888 or 1800 657 573
• Sunraysia Community Health Services Tel. (03) 5022 5444
• Barwon Health Sexual Health Clinic Tel. (03) 5226 7489
• Victorian Aboriginal Health Service Tel: (03) 9419 3000
• 1800MyOptions Tel: 1800 696 784 is a statewide phone service for information about sexual health as well as contraception and pregnancy options
• Sexual Health Victoria (SHV). To book an appointment call SHV Melbourne CBD Clinic: (03) 9660 4700 or call SHV Box Hill Clinic: (03) 9257 0100 or (free call): 1800 013 952. These services are youth friendly.