Everything you need to know about parenting and HIV

By Zoë Schulz,

We have seen enormous progress when it comes to HIV prevention and treatment over the past decades, however, education is still lacking with a sea of misinformation still out there. When it comes to starting a family, both your health and the health of your child are incredibly important. The journey into parenthood can be filled with excitement, but it is normal for there to be nerves too, and adding an HIV diagnosis on top of the usual parenting stressors means you need information you can trust and a support system you can lean on.

Effective medication means that someone living with HIV can live a long and healthy life without passing the virus onto anyone else. The medication works by reducing the amount of the HIV virus in a person’s body down to an almost untraceable amount - this is known as an undetectable viral load.

When someone has an undetectable viral load, they can no longer pass on HIV – this includes through unprotected sex. Not only does it mean that they won’t pass the virus on, but they can live a happy and healthy life, and yes, without a doubt, that can include creating a family too.

There is no reason someone living with HIV wouldn’t be able to enjoy the joys and challenges that come along with parenthood. However you decide to start a family, ensuring you have up-to-date and accurate information is essential. There is also a strong and supportive community available to HIV positive people, so consider reaching out for support and speaking to others with a similar experience to your own.

What are my options?

One of the benefits of our modern world is the growing acceptance of families outside of the nuclear, heteronormative mould. Families come in many shapes and forms – whether it’s a single-parent household, one with two mums, two dads, or a co-parenting set-up – what truly matters is that a child has a loving and safe family.

When it comes to parenting and HIV, just as with other families, there is a multitude of options available. Following medical advice means that women and people with uteruses who are HIV positive can give birth to children without passing on the virus. Medication is key to preventing vertical transmission (also known as mother-to-child transmission), as well as openly discussing this with your doctor throughout your journey to parenthood.

There are very few, if any, cases of HIV being passed down from the father’s side (or a parent assigned male at birth) during conception. Again, it is always better to consult with your GP, but this is not considered a risk by medical professionals.

Living with HIV would also not stop you from adopting; as long as you can meet the child’s needs, your HIV status should not be a factor. LGBTQ+ couples and singles have also been able to adopt in the UK since 2005, with similar laws in place across the world. If you feel you have been discriminated against because of your identity or HIV status during the adoption process, reach out for legal advice and support from local services, such as Terrence Higgins Trust.

When it comes to IVF, your HIV status should not be a factor, as if you are on effective medication with an undetectable viral load, it is a safe and viable option. However, the laws in many countries have not kept up with the medical advancements and can be discriminatory – for example, in the UK and Europe, LGBTQ+ couples where one partner is HIV positive are barred from accessing fertility treatment.

“Heterosexual couples where one or both partners live with HIV are allowed to access fertility treatment. However, people living with HIV who wish to use a surrogate, or LGBT couples where a woman living with HIV wishes to have her egg implanted in her female partner, are prevented from doing so as their eggs and sperm are considered ‘donor’ gametes rather than partner gametes,” explains charity, National AIDS Trust. “Under European law, there is an outright ban on anyone living with HIV being able to donate eggs or sperm.”

As LGBTQ+ couples accessing IVF are categorised as ‘donors,’ the laws that apply to them are different to couples of the opposite sex and prevent them from being able to start a family through IVF. National AIDS Trust is calling on the UK government to overturn this ban, as it is unfair and discriminatory.

“The whole thing just feels so outdated,” Andrew, an HIV-positive gay man in his 30’s, shares. “I’m on treatment, which means the HIV in my body is undetectable, and I can’t pass it on, so this law doesn’t even need to exist. I was being told I couldn’t have my own biological child when there was no reason for it. It feels like the government is practically forcing infertility on LGBT+ people living with HIV."

Knowing your HIV status is the best way to prevent HIV from being passed on. This means if you are HIV positive, you will know and can therefore take full advantage of the medication available. Your doctor can work with you to ensure any risks of passing the virus on are minimised. In the UK, all pregnant people are encouraged to test for HIV. If you are unsure of your HIV status, regular testing allows you to take control of your sexual health and make the best decisions for yourself and those around you.

Preventing vertical transmission

The reason pregnant people are all encouraged to test for HIV is because when you know you are HIV positive, there are many effective ways to prevent vertical transmission. The biggest risk of vertical transmission occurring is when someone has HIV and does not know, or they do not have access to medical care to prevent transmission.

If you are HIV positive and pregnant, taking HIV treatment, with an undetectable viral load, the chances of your baby being born with HIV are decreased to only 0.1%.

There are three ways vertical transmission can take place - during pregnancy, delivery or through breastfeeding – which is why there are a set of strategies used to prevent transmission for all three. These include:

· Taking HIV treatment

· Avoiding breastfeeding – especially if your HIV is detectable

· Deciding with your doctor if it is advisable to have a caesarean

· Giving the baby HIV treatment for a few weeks after birth

By working with your doctor to follow this strategy, the chance of passing on HIV to your baby becomes very low, and you can start your journey into parenthood feeling reassured.

Your treatment during pregnancy

HIV treatment is a vital way of preventing the virus from being passed on to the baby and keeping you healthy during pregnancy. Research suggests HIV treatment is safe to use during pregnancy, with the benefits greatly outweighing the risks of not taking them.

If you find out you have HIV during pregnancy, it is recommended to start taking medication as soon as possible. By doing so you are able to look after your own health and protect your child from being born with HIV.

Support

There is a myriad of support options available for HIV-positive parents, and it can be hugely helpful to speak to others in a similar situation to yourself. Everyone’s parenting journey will come with its own challenges, so having a strong support system and methods of coping with any difficulties that arise along the way will be vital.

From peer support, to therapy, find what works for you and don’t be afraid to ask for help when you need it. Here are just a few of the resources available. There are also plenty of local support options, so it is worthwhile searching for what is available close to wherever your home might be.

THT Direct helpline: Call THT Direct on 0808 802 1221 for support, advice and information or email us at [email protected].

THT: Peer-support, online therapy, and workshops

NAM: In-depth information around HIV

Positively UK: Peer mentoring, women’s space, dealing with diagnosis, and more support groups and resources.

The Sussex Beacon: Specialist care and support for people living with HIV.

George’s House Trust: HIV support, advice and advocacy

Living with HIV is no longer a death sentence, and a diagnosis does not have to change the quality or direction of your life. All parenting journeys are unique, and for parents with HIV, this will be no different – however your HIV status does not have to stop you from enjoying and living the life you always dreamed of, and if that has included starting a family, there is no reason this should change. Surround yourself with community, seek out people who understand and support you, and appreciate the small moments with the people you love.

Glossary

Vertical transmission: Also known as mother-to-baby transmission, this is the transmission of a virus or infection from birthing parent to baby

Undetectable viral load: Viral load is the amount of HIV in the blood. With effective medication, a person’s viral load will decrease to undetectable levels. This means the levels of HIV are so low that the virus cannot be passed on.

IVF: In vitro fertilisation (IVF) is one of several fertility techniques available to help people have a baby. During IVF, an egg is removed from the person’s ovaries and fertilised with sperm in a laboratory. The fertilised egg, called an embryo, is then returned to the person’s womb to grow and develop.

Image source: Canva