This booklet aims to help you get the most out of your own 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 the health of your baby.
You may be reading this guide 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 about both at the same time.
Both pregnancy and HIV care involve many new words and terms. We try our best to be clear about what these terms 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 source of information to help you. The advice that you receive from these sources and others may be different to that given to pregnant women generally. This includes information on medication, Caesarean section (C-section) and breastfeeding.
Most people with HIV have some 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 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:
The decisions that you make about your pregnancy are very personal. Having as much information as possible will help you make informed choices. You can only make these decisions after learning all you can about HIV and pregnancy, and with your healthcare team.
I was diagnosed via antenatal testing when I was three months pregnant. What a time to receive bad news! I had a lot to think about and at the same time start treatment straight away.
The support I got from my group was invaluable in helping me appreciate the treatment and take it as prescribed. The thought of having a healthy baby made me determined to follow everything in detail.
I had a bouncing HIV negative baby boy thanks to ARVs.
After he was born I stopped my medication, on my doctors recommendation, as I did not need it for myself. My CD4 is quite good (above 600) and I had an undetectable viral load at the time of my baby's delivery.
-- Jo, London
Yes, and HIV treatment makes this much safer.
Women around the world have safely used antiretroviral drugs in pregnancy now for almost 20 years. Currently this usually involves taking at least three antiretroviral drugs, which is called combination therapy, ART or HAART.
Antiretrovirals 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).
I've often said that having an HIV diagnosis does not change who you are. Like many young women I had always wanted to be a mother. In some way, having a positive diagnosis made me think about it even more.
I had my baby five years after I was diagnosed. That was way back in 1998. I guess I was lucky in a lot of ways because by the time I made the decision to have a baby I'd had a lot of peer support, information and met a lot of other HIV positive women, who also had either been diagnosed antenatally, or had children after their diagnosis.
One of the most difficult things during and after my pregnancy was the uncertainty about whether -- even taking up all the interventions that were available to me -- my baby would be born HIV-negative.
I cannot describe my feelings when I finally got the all clear for my beautiful baby. All the worry, fear and uncertainty were definitely worth the wait!
-- Angelina, London
The exact way that transmission (when the virus passes from one person to another) from mother to baby happens is still unknown.
Mother to baby transmission is known as vertical transmission. The majority of vertical transmissions happen near the time of, or during, labour and delivery (when the baby is being born). Vertical transmission can also occur through breastfeeding.
Certain risk factors seem to make transmission much more likely. The biggest of these is the mother's viral load, which means the amount of virus in your blood.
As with treatment for anyone with HIV, one important goal is to reach an undetectable viral load. Viral load tests measure the amount of virus in your blood. The measurements are in copies per millilitre (copies/ mL). Undetectable viral load is currently considered to be below 50 copies/mL. When we talk about an undetectable viral load in this guide, that is what we mean. If a mother's viral load is undetectable when her baby is born, the risk of vertical transmission is almost zero.
This is particularly important at the time of delivery. Other risk factors include premature birth and lack of prenatal HIV care.
Practically all risk factors point to one thing: looking after mother's health.
Some key points to remember:
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, if she tests positive, she can be aware of how she can protect her baby from HIV.
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 percent 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.
Reducing the risk of a baby becoming HIV positive was an early benefit of antiretrovirals. Although, pregnant women are often advised against taking medications, this is not the case with HIV treatment. This difference can sometimes seem confusing.
No one can tell you that it is completely safe to use antiretrovirals while you are pregnant but thousands of women have taken these medicines all over the world without any complications to their baby. This has resulted in many healthy HIV negative babies.
During your prenatal discussions, you and your doctor will discuss the benefits and risks of treatment options for you and your baby.
When most of everything felt right, my health and relationship, having a baby, after more than 20 years since my last child, was the best feeling. After discussions with my partner and my doctor, I decided to have a baby. We did this while continuing with my current meds and of course not breastfeeding.
I was determined to do everything in my power to have an HIV negative baby. Combination therapy has fulfilled my dreams of becoming a mother again.
-- Jenny, London
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.
So far, the registry has not seen an increase in the type or rate of birth defects, in babies whose mothers have been treated with currently used antiretrovirals, compared to the babies born to mums not using these drugs.
Pregnancy does not make a woman's HIV get any worse.
However, being pregnant may cause a drop in your CD4 count. CD4 cells are a type of white blood cell that helps our bodies fight infection. They are the cells that HIV infects and uses to make copies of itself. Your CD4 count is the number of CD4 cells in one cubic millimetre (written cells/ mm3 but in this guide we will just use the number eg 350) of blood. CD4 counts vary but an HIV negative adult would expect to have a CD4 count in the range of 400 to 1,600. Nearly all HIV treatment guidelines recommend starting treatment at 350 (and earlier in some cases).
The CD4 drop in pregnancy 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. Below this level, you are at a higher risk from opportunistic infections. These are infections that occur after HIV has damaged your immune system.
These infections could affect both you and the baby, and you will need to be treated for them immediately if you get one. In general, pregnant women need the same treatment to treat and prevent opportunistic infections as people who are not pregnant.
Also sometimes if you start taking ART 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 ART.
The virus also does not affect the health of the baby during pregnancy, unless the mother develops an opportunistic infection.
This booklet is about HIV and pregnancy. Other important aspects of HIV treatment and care are described in detail in other i-Base guides, including:
These free booklets provide additional information on the basics of using and getting the best out of your treatment. They also explain in more detail words and phrases introduced in this one that may be unfamiliar or confusing, including CD4, viral load and resistance.
We hope that you will use all of these booklets together when you need them. Your clinic may have copies of any or all of them. You can also order them online.
i-Base provides a specialised HIV information service.
It is online at http://i-base.info/qa/ask-a- question?first=yes.
or by email at email@example.com.
Frequently asked questions about HIV and pregnancy are online at http://i-base.info/qa/faqs-on-having-a-baby.
There is also a free telephone information support service at the following number: 0808 800 6013. The service is available from 12 to 4 pm on Monday, Tuesday and Wednesday.
If you want to ask questions about HIV treatment and pregnancy, please contact us and we will try to help.
Please also talk to your health care team if you need additional support and information.
Good sources of community support:
From Pregnancy to Baby and Beyond peer support project at Positively UK. Women (and men) can either self refer or be referred by their clinic.
firstname.lastname@example.org or 02077130444.
Body and Soul -- a family HIV charity.