Recently I was a doula for a young mum who expressed a great desire to breastfeed her second child, something she was denied with her first child based solely on the grounds that she was HIV+. Here in Northern Ireland, doctors consider the risks of HIV+ and breastfeeding to exceed the risks of formula feeding. The stance remains that considering we live in a developed country and there is access to safe water and sterilisers, the policy is that HIV+ mothers should be advised to formula feed as it eliminates all risk to the child. Breastfeeding was signed off as contraindicated in this mum’s maternity notes!
The point of this case study is to share some recent revolutionary and ground-breaking progress regarding HIV+ mothers and successful breastfeeding in Northern Ireland.
The key issues were to present the most recent research and evidence regarding HIV and breastfeeding, so we could confidently approach the local medical team to request their support and guidance for this particular HIV+ mum to successfully breastfeed with no risk to her baby.
HIV Facts and Pregnancy and Breastfeeding
Obviously the main risk is the transmission of HIV from mother to baby. This can be by vertical transmission from mother to baby if the baby comes into contact with mum’s blood or bodily fluids, and through breastfeeding. The biggest risk for vertical transmission is the mother’s viral load – a measure of how much HIV is in the blood. Anti-retro viral therapy (ART) is taken to reduce the viral load to ‘undetectable’, giving a risk factor of zero. HIV is present in breast milk just like the viral load in blood. The risk of infection is there because the virus in the milk could pass through the lining of the baby’s stomach. Therefore if a HIV+ mother chooses to breastfeed, breastfeeding has to be exclusive up to 6 months old. If anything else passes the baby’s lips it threatens the impermeability of the gut wall and increases the chances of the virus passing into the bloodstream.
In this particular case, mum’s personal circumstances consider her to be ‘low risk’ mainly due to a consistently undetectable viral load for many years.
My first point of contact was Maddie McMahon, who was able to signpost us directly to Pamela Morrison, a specialist in HIV and breastfeeding. Maddie and fellow DUK members also signposted me to the various weblinks as shown at the end of this article which proved invaluable. I continued with my research into HIV, and started to read the many articles and links from Pamela. What a steep learning curve, but utterly fascinating!
Meanwhile mum culminated all the latest information, research and evidence from Pamela, which she needed to discuss with her midwifery team, obstetrician, paediatrician and specialist GUM consultant. She also finalised a birth plan which detailed clearly her wishes and plans for this birth, which she shared with her medical team. We both knew it was going to be hard work and a bit of a struggle, but the medics soon realised mum was serious and committed in her desire to breastfeed.
What made a difference
- Mum has been HIV+ for more than ten years with no risk factors, and is meticulous with her medication. She has never missed a single appointment, and has been on the same combination ART (anti-retro viral therapy) for years now, achieving a consistently undetectable VL (viral load) long before and during pregnancy.
- Lab agreed to turn around any of mum’s VL tests within three days instead of three weeks to support the level of monitoring requested by her medical team – without this support the GUM specialist probably would not have agreed to oversee breastfeeding at all.
- Having the most up to date research and evidence on HIV+ and breastfeeding to enable a full discussion with the medical team early on in the pregnancy.
- Addressing breastfeeding issues, potential problems and preventive measures, and being equipped with knowledge on mastitis, sore/bleeding nipples, home pasturisation. Awareness of local support, eg hospital grade pump, breastfeeding counsellor, health visitors.
- GUM specialist can overrule other healthcare providers. Luckily this mum’s GUM specialist had four exclusively breastfed babies of his own, although he could not support breastfeeding as a matter of course. The interpretation of the BHIVA guidance led him to conclude that formula feeding remains the first choice feeding option for HIV+ women in NI under his care for clinical and ethical reasons. However he wrote a letter of instruction to all the medical teams involved after taking time to seek appropriate professional advice from another specialist consultant in London. He explained that he had to take a very detailed look at into patient history covering all clinical aspects, including routine test results, allergic reactions, toxicity, resistance to drugs, compliance, responsibility, attendance to clinic and existing knowledge and expectation of HIV+ and breastfeeding. GUM specialist and Paediatrician met to discuss all options and made a decision on the best course of action.
✔ Obstetrician wrote in the maternity notes that mum wished to have a water birth and breastfeed, including that she had researched feeding in depth.
✔ Paediatrician wrote in her maternity notes that mum wishes to breastfeed and he supports her decision (massive step plus a huge success for mum).
✔ GUM specialist took time to seek professional advice from another specialist consultant in London.
✔ Health visitor reassured mum that they would be looking out for her and would support her and help with technique to ensure optimal latch.
✔ Midwifery team assessed the birthing pool and deemed it safe for water birth without concern of cross infection.
✔ NI revolutionary and groundbreaking for HIV + mothers. One of the first HIV+ mum to successfully breastfeed in NI.
✔ It prompted the Royal Victoria Hospital in Belfast to produce their own guidance on HIV+ and breastfeeding for the first time.
✔ Mum has completed feedback for her paediatrician regarding his practice and he has mentioned that this journey will be the foundations of protocol for future breastfeeding mums and will be the next step forward for HIV+ mums and babies in the coming years.
Mum had the lovely uncomplicated, water birth she could only have dreamed of, complete with skin to skin and delayed cord clamping. And she continues to EBF – five months later!
- Pamela Morrison – available to talk to individual mums
- To find out more information on HIV +
WHO 2016, Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection: recommendations for a public health approach – 2 nd ed. ISBN 978 92 4 154968 4 available at http://www.who.int/HIV/pub/arv/arv-2016/en/http://www.belfastlive.co.uk/news/new-research-reveals-more-people-12051623
- Consider your options
- Do the research and know what you are talking about
- Share your knowledge, provide the evidence
- Discuss your options very fully with your medical team well in advance
- Make your wishes known
- Obtain the support of your medical team
- Consider risk management implications.
Feedback from mum:
“I really can’t tell you how much your help and support has done for me. Without your research, signposting, open mindedness and forward thinking, I really don’t think I would be empowered enough on my own to ask for things like a water birth or really pursue breastfeeding like I wanted to, as previously these things were made out to be so completely unobtainable.”
Maddie McMahon for signposting us to Pamela Morrison, La Leche League, information on the evil nip nasties (https://thebirthhub.co.uk/2016/06/18/evil-nip-nasties-cracks-blisters/), her expertise and support as always.
Pamela Morrison for all the articles, most up to date research, reassurance and guidance. Doulas in the Doula UK Facebook for their support and sharing their experiences.