Background and general questions

This booklet aims to help you get the most out of your own HIV treatment and care if you are considering pregnancy or during your pregnancy.

We hope that the information here will be useful at all stages—before, during and after pregnancy. It should help whether you are already on treatment or not. It includes information for your own health and for the health of your baby.

If you have just been diagnosed with HIV
Can HIV-positive women become mothers?
How is HIV transmitted to a baby?
Are pregnant women automatically offered HIV testing?
How do HIV drugs protect the baby?
Is it really safe to take HIV medicines during pregnancy?
Will being pregnant make my HIV worse?

If you have just been diagnosed with HIV

You may be reading this booklet at a very confusing and hard time in your life. Finding out either that you are pregnant or that you are HIV-positive can be overwhelming on its own. It can be even more difficult if you find out both at the same time.

Before reading this booklet, you may have never before known or read anything about HIV. As you will see, both pregnancy and HIV care involve many new words and terms. We try our best to be clear about what these terms really mean and how they might affect your life.

On an optimistic note, it is likely that no matter how difficult things seem now, they will get better and easier. It is very important and reassuring to understand the great progress made in treating HIV. This is especially true for treatment in pregnancy.

There are lots of people, services and other sources of information to help you.

The advice that you receive from these sources and others may be different than that given to pregnant women generally. This includes information on medication, Caesarean section (C-section) and breastfeeding.

Most people with HIV have a lot of time to come to terms with their diagnosis before deciding about treatment. This may not be the case if you were diagnosed during your pregnancy. You may need to make some difficult decisions more quickly.

Whatever you decide to do, make sure that you understand the advice you receive. Here are some tips if you are confused or concerned as you consider your options:

Ask lots of questions.
Take your partner or a friend with you to your appointments.
Try to talk to other women who have been in your situation.

The decisions that you make about your pregnancy are very personal. Having as much information as possible will help you make informed choices.

The only “correct” decisions are those that you make yourself. You can only make these after learning all you can about HIV and pregnancy and with your healthcare team.

Can HIV-positive women become mothers?

Yes, with HIV treatment. Women around the world have safely used antiretroviral drugs in pregnancy now for over 10 years.

Currently this usually involves taking at least three anti-HIV drugs, a strategy called combination therapy or HAART. These treatments have completely changed the lives of people with HIV in every country where they are used.

Treatment has had an enormous effect on the health of HIV-positive mothers and their children. It has encouraged many women to think about having children (or having children again).

Regardless of pregnancy, women should receive optimal treatment for their HIV status

Your HIV treatment will protect your baby

The benefits of treatment are not just to your own health. Treating your own HIV will reduce the risk of your baby becoming HIV-positive to almost zero.

Without treatment, about 25% of babies born to HIV-positive women will be born HIV-positive. One in four is not good odds, though, especially because modern HIV treatment can almost completely prevent transmission.

How is HIV transmitted to a baby?

The exact way that transmission from mother to baby happens is still unknown. The majority of transmissions occur near the time of, or during, labour and delivery (when the baby is being born). It can also occur through breastfeeding.

Certain risk factors seem to make transmission much more likely. The strongest of these is the extent of the mother's viral load.

As with anyone with HIV, one important goal of treatment is to reach an undetectable viral load. This is particularly important at the time of delivery. The time between when your waters break and the actual delivery is also a risk factor for transmission. This period is called 'duration of ruptured membranes'.

Other risk factors include premature birth and lack of prenatal HIV care. Practically all risk factors point to one thing: looking after mothers health.

Some key points to remember:

The mother's health directly relates to the HIV status of the baby.
Whether the baby's father is HIV-positive will not affect whether the baby is born HIV-positive.
The HIV status of your new baby does not relate to the status of your other children.

Are pregnant women automatically offered HIV testing?

Healthcare providers have been required to offer and recommend that all pregnant women have an HIV test in the UK since 1999. This is now part of routine prenatal care.

It is now recommended in many parts of the world. In the UK healthcare providers have been required since 1999 to offer and recommend that all pregnant women have an HIV test. This is now part of routine prenatal care.

It is important for a woman to take an HIV test when she is pregnant. Her ability to look after her own treatment, health and well-being is improved when she knows if she has HIV or not. This knowledge also means that she can be aware of how she can protect her baby from HIV, if she tests positive.

How do HIV drugs protect the baby?

Baby boy's head By reducing the risk that HIV will be transmitted to the baby.

PACTG 076 is the name of a famous joint American and French trial whose results were announced in 1994. This was the first study to show that using the drug AZT could protect the baby. Mothers took AZT before and during labour, and the baby received AZT for six weeks after birth. This reduced the risk of the baby becoming HIV-positive from 25% to 8%.

After 1994, this strategy was recommended for all HIV-positive pregnant women. Even further advances have been made over the last few years, especially since combination therapy became more common the late 1990s. Transmission rates with combination therapy are now less than 1%.

AZT is still the only drug licensed for use in pregnancy. There is also a lot of experience of using it. Many doctors still prefer to include it in a woman’s combination if she is pregnant. However, if you have resistance to AZT, you should not use this drug. Other reasons some women do not use AZT might be that they find the drug’s side effects very difficult to manage or that they are already on an effective, stable combination that does not contain AZT.

In these cases, it is OK to use a combination without AZT. Transmission rates of mothers using combinations without AZT are similar to those that contain AZT. A general rule of thumb is “What’s best for mum is best for baby”.

It is important to remember though that despite huge advances and successes, using combination therapy for pregnant women is still at a relatively early stage. Many aspects of its use are still unproven. You will need to discuss the benefits and risks of treatment with your healthcare team. This will include known and unknown short- and long-term factors.

Is it really safe to take HIV medicines during pregnancy?

Pregnant women are generally advised to avoid taking any medications. However, this is not the case when considering the use of HIV treatment during pregnancy. This difference can seem confusing.

No one can tell you that it is completely safe to use HIV drugs while you are pregnant. Some HIV medicines, for instance, should not be used during that period. At the same time, however, many thousands of women have taken therapy during pregnancy without any complications to their baby. This has resulted in many HIV-negative births.

During your prenatal discussions, you and your doctor will weigh up the benefits and risks of using treatment to you and your baby.

Antiretroviral Pregnancy Registry

Your healthcare team also has access to an international birth defect registry. This has tracked birth defects in babies exposed to antiretroviral drugs since 1989. The registry can be found at;

Antiretroviral Pregnancy Registry
http://www.apregistry.com/

So far, the registry has only seen a small increase in the type or rate of birth defects compared to the babies born to mums not using HIV drugs. This is connected to the drug ddI.

Will being pregnant make my HIV worse?

Pregnancy and opportunistic infections

Pregnancy does not make a woman's own health get any worse in terms of HIV. It will not make HIV progress any faster.

However, being pregnant may cause a drop in your CD4 count. This drop is usually about 50 cells/mm3, but it can vary a lot. This drop is only temporary. Your CD4 count will generally return to your pre-pregnancy level soon after the baby is born.

The drop should be a concern if your CD4 falls below 200 cells/mm³.

Below this level, you are at a higher risk of opportunistic infections (OIs). These infections could affect both you and the baby, and you will need to be treated for them immediately if they occur. In general, pregnant women need the same treatment to prevent OIs as people who are not pregnant.

Also sometimes if you start taking treatment in pregnancy your CD4 count many not increase very much, even though your viral load goes down. If this happens don't worry, your CD4 count will catch up after the baby is born.

HIV does not affect the course of pregnancy in women who are receiving treatment. The virus also does not affect the health of the baby during pregnancy, unless the mother develops an OI. Baby holding a question mark

If you have just been diagnosed with HIV…

CD4 count, viral load and other words and phrases are explained in the glossary.

The decisions that you make about your pregnancy are very personal. Having as much information as possible will help you make informed choices. The only 'correct' decisions are those that you make yourself.