HIV+ birth and breastfeeding

A few years ago I was a doula for a young mum who had 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!

I’d like 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. 

Progress

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 Doula UK members also signposted me to the various weblinks as shown at the end of this blog, 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

  1. Mum had been HIV+ for more than 10 years with no risk factors, and was meticulous with her medication.   She never missed a single appointment, and was on the same combination ART (anti-retro viral therapy) for years, achieving a consistently undetectable VL (viral load) long before and during pregnancy.
  2. Lab agreed to turn round any of mum’s VL tests within 3 days instead of 3 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.
  3. 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.
  4. Addressing breastfeeding issues, potential problems and preventive measures, and being equipped with knowledge on mastitis, sore/bleeding nipples, home pasteurisation. Awareness of local support, eg hospital grade pump,  breastfeeding counsellor, health visitors.
  5. GUM specialist can over rule other HCPs.  Luckily this mum’s GUM specialist had 4 EBF 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.

Result!

✔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 humongous 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 has forced the local maternity hospital 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

Supporting a triplet birth

Well, can you imagine the excitement of receiving an enquiry to be a birth doula to triplets! Of course I contacted the mum straight away for a chat and to arrange an informal visit. Then reality hit! I knew that having another doula on board would be a great asset – so many babies and not enough hands… I called the mum again to chat about having another doula and she was interested. So then I contacted my colleague, Sara Benetti to ask if she was interested and really I knew it would be a no-brainer! Sara has experience of twins natural birth and I just knew she was the perfect partner as we often work together offering shared care and back up for each other. So Sara and I met with the parents of the triplets and we were hired by the end of our visit!

We had a great first antenatal meeting with the parents, discovering how the triplets were a huge surprise for the family. It was not an assisted (IVF) pregnancy and the odds of naturally conceiving triplets are in the region of one to few millions; additionally only one out of 6,000 to 8,000 triplet pregnancies is spontaneous.
We were so excited especially as the parents were planning a natural birth for their babies, possibly in water. We supported them by talking through their options, their birth plan, negotiation around mum’s care and what they were and were not willing to accept in terms of interventions. As soon as we left the meeting, we drew up an on-call rota as mum was nearly 30 weeks and 35 weeks is considered full term for triplets. This worked well for everyone involved as both Sara and I had some holidays booked, but it also gave mum and dad peace of mind that at least one of us would be around if the babies decided to make an early appearance.

However it all worked out so well in the end. Even though the parents were very keen for a natural birth, at the same time they were fine with a highly monitored pregnancy and agreed to induction as soon as there were signs that one of the identical twins was not growing as much as the other. Both Sara and I were available when mum went into hospital at 35+2 for ARM to get labour started. Labour progressed quite quickly and twin 1 swam into this world at tea time, followed half an hour later by twin 2 on dry land and breech. Half an hour later baby 3 burst into this world, again breech. All babies were fit and healthy and paediatrics who were standing outside the door, were stood down. Having 2 doulas was a dream, as when the babies were born and placed with dad for skin to skin, one doula remained with mum for reassurance, and the other doula supported dad and took some videos and photos.

It really was one of the most incredible experiences of all of our lives, including the consultant and midwives, especially mum and dad, and of course for Sara and myself. Full credit to mum, who really is an amazing goddess, a very quiet labourer who likes to be left alone! It was amazing to see the identical twins being born, followed by the biggest baby, all fraternal.

We kept in contact with mum during her stay in hospital and visited her when she returned home. Luckily I was able to continue to support the family on a weekly basis as a Family Support Volunteer with a local charity, Tinylife (until the covid-19 pandemic).

Parents: “Having the support of doulas for a multiples pregnancy was very important to us as we strove to have a natural birth with minimal interventions.”

A wee postnote to say it was not all was smooth sailing… some of the hospital staff were not overly keen on two doulas being present, but we did our homework and contacted the Head of Delivery Suite ahead of time, for reassurance that our presence would be acceptable.

Pinch me!

It’s three years since I began this amazing doula journey, and 35 births later plus supporting an additional 6 families postnatally, I am still in awe of the magic of birth and how the presence of a tiny wee baby can affect each and every one of us.  No matter how much preparation goes into coping with pregnancy, labour, birth and bringing baby home, I still see the jubilation and nervous mixture of raw emotion when baby meets mummy and daddy in those early days. I love it!  I feel so very privileged to offer support at this precious, intimate, life-changing event and I will never tire of doing so.

And this leads me on to why I have had my head in the clouds this past weekend.  I humbly received an award for ‘Doula of Distinction’ at the NI Positive Birth Conference in Belfast amidst many of my birthing heros.  Check it out! Not only the headline presenters, but so many strong, fierce mummies together with health professionals and volunteers all endeavouring to improve the perinatal experience for families in Northern Ireland. Wow! It was truly amazing, inspirational, emotional, raw – a bit like birth really.

Playing the waiting game..

One of the many lovely things about being a doula is waiting on receiving a call or text from your client to say she thinks she might be in labour.  Sometimes it’s completely out of the blue when baby decides to make an early arrival, or usually it’s when mum has gone past her guess date and she is beginning to think that baby will never come!  I completely empathise with the parents once mum reaches the magical ‘guess date’, and then one day passes, another day and perhaps even a week….or two!  It can feel overwhelming as the family try to be patient and chilled, but really they are so excited at the prospect of meeting their wee baby that it’s difficult to keep emotions under control.  Seriously, how many times can you clean your house or keep filling up the freezer!  Just one more time!

As a doula, I am experiencing similar anticipation.  I often think to myself, if I just tidy this cupboard that I keep meaning to, then I’ll get the call……or if I just run a wee bit faster, then I’ll get the call…you get the drift!  Of course it doesn’t matter how many cupboards I clean, or how fast I run, the baby will come when it’s time.  I know that, but it doesn’t stop me from thinking like that as I play the waiting game too!