In this edition of our "Spotlight: Women Making a Difference" series, The Well Project asked A Girl Like Me blogger Heather O'Connor about breastfeeding as a woman living with HIV in the United States. In this candid, in-depth interview, Heather shares how she found The Well Project after her HIV diagnosis; making the joyful but stigmatized decision to breastfeed her daughter, and her advocacy throughout the process; how factors like white privilege, a support system, and the threat of HIV criminalization affected her experience; advice she received while breastfeeding; why she is sharing; and what she believes must be done so that more women living with HIV can have their providers' support in making informed infant feeding choices.
Heather, thanks so much sharing your story with us! To begin, how did you find The Well Project and what prompted you to reach out?
I'm so thankful for the opportunity to share! Thank you all so much for having me. I discovered The Well Project in June of 2016 following my HIV diagnosis. Overwhelmed with the weight of my diagnosis, my personal lack of knowledge regarding the virus (which, in my opinion, is something that should be addressed through sexual education both in the school systems, as well as with guardians at home), and need for support, I began browsing the internet and discovered blogs from A Girl Like Me, as well as other helpful resources for women living with HIV on The Well Project website. I frequented the website after discovering it. It was helpful for me to obtain information and firsthand accounts coming from women who were also living with the virus. Following my diagnosis, I received support from my partner, immediate family, and a few of my closest friends with whom I'd shared my diagnosis; however, I was thankful to have access to resources coming from other women who had also received an HIV diagnosis and were able to share their own personal coping experiences.
It wasn't until March of 2017 that I made the personal decision to publicly post a video on my Instagram account (I am a trained dancer) of myself improvising movement to an excerpt from the documentary How to Survive a Plague (available to stream on Amazon Video and other services – I highly recommend watching), along with a blurb regarding my HIV diagnosis. The response I received from family and friends was an overwhelming amount of sadness and support. With time, my confidence to openly share details regarding my diagnosis grew and I became very interested in exploring my identity as an advocate for other individuals, specifically women living with HIV. During this time, I wrote an email to The Well Project inquiring about available advocacy work and eventually was given the opportunity to begin blogging for A Girl Like Me. I have continued blogging for A Girl Like Me throughout this pandemic and have made connections with other wonderful women, allowing my network of support to grow and strengthen. I am happy to share my story with others in an effort to raise awareness about the virus and to be an active part of a support system for other women living with/affected by the virus.
What have been some of the results of writing about your experiences? What kinds of responses have you gotten?
Since beginning to blog for A Girl Like Me, I've been given the opportunity to revisit and share the story of receiving my diagnosis, my life and health leading up to the diagnosis, and my journey after the diagnosis. I have been able to consider and shed light on the difficulties that come with navigating obtaining HIV medication, the importance of medication adherence to achieve and maintain viral suppression, and the dire need of support from others to manage life with HIV. Blogging has allowed me time for self-reflection, as well as given me opportunities to share my experiences with others while simultaneously raising awareness. I have become connected with other women active in the HIV community and have had the privilege of hearing their stories as well. It has been enlightening to have made these connections and to become involved in a network of such strong, powerful women. I feel proud to stand with and by them.
Overall, the response I have received from others has been largely positive and inquisitive. I have had several friends reach out to me with questions regarding HIV. My husband has had this experience with his friends, as well. Mostly I find that others are interested to learn about U=U (Undetectable Equals Untransmittable) and how that allows for my husband and me to have a healthy sex life without any risk of transmission and how we navigate day-to-day life as a serodiscordant couple. I have also received multiple questions regarding pregnancy and HIV, and I am always more than happy to share my experiences with others.
Breastfeeding while living with HIV is not common here in the US, but you breastfed your first child. Can you tell us how you made that decision?
When I became pregnant and started receiving prenatal care, my initial intention was to use formula to feed my baby because of my HIV diagnosis. All of the research I had done regarding infant feeding in the United States, including the CDC (US Centers for Disease Control and Prevention) recommendation, stated that the safest way to feed your infant as a mother living with HIV (in the United States) was with formula in order to prevent any risk of transmission from mother to child. I recall reading that breastfeeding was encouraged for mothers living with HIV in Africa, due to lack of access to formula and clean water. Statistically speaking, the risk of infant death due to factors such as diarrhea (from unclean water sources) is higher than the risk of HIV transmission to a child through breastfeeding from a mother who has achieved viral suppression (undetectable viral load). Further recommendations suggest that antiretroviral therapy for the child, such as AZT, should be administered to the child during the exclusive breastfeeding period, which should range from (at least) six months to two years to further prevent transmission of the virus to the child.
It wasn't until I had an initial appointment with a new infectious disease doctor that I even began considering the concept that I could breastfeed my child. Before being diagnosed with HIV, I had big plans of being a mother someday. Within those plans, I envisioned myself breastfeeding my child. Following my diagnosis, I was prepared to follow recommendations from my medical health care professionals to ensure the absolute safety of my child, and this included giving up my dreams of breastfeeding and choosing to use formula instead, if that's what I was instructed to do by professionals to reduce any risk of transmission. It's even written on the bottle of my HIV medication in all capital letters: "BREAST MILK CAN TRANSMIT YOUR INFECTION TO YOUR INFANT; THEREFORE DO NOT BREASTFEED." (A further conversation regarding the offensiveness of that language to women living with HIV is definitely one to be had, as well.)
However, while at my appointment with my newly assigned infectious disease doctor (my previous doctor had left the practice), he asked me what my intentions were for feeding my child. I immediately answered by saying "Oh, formula, of course. I know." He responded by asking me whether or not I wanted to breastfeed, to which I responded by saying, "Well, yes, of course. I always imagined I would breastfeed my child before being diagnosed with HIV, but now I know that's just not possible. Is it?"
The doctor then began to inform me about the PROMISE studies conducted in Africa, which were intended to investigate whether an exclusive breastfeeding relationship between a child and a mother with an undetectable viral load posed any risk for transmission of the virus. The findings from the studies, at the time my infectious disease doctor was informing me of them, were that the risk of transmission from mother to child (when mother obtained and maintained an undetectable viral load and child was treated with antiretrovirals as a preventative during the breastfeeding period) was less than 1 percent.
That being said, while we can now assert with significant scientific research that a person living with an undetectable viral load CANNOT transmit the virus through sexual contact (U=U), under any circumstance, the same is not true for breastfeeding. Further research is still needed in order to discover exactly what being undetectable means for a mother living with HIV who wishes to breastfeed her child. In the US, it is assumed that formula and clean water are generally accessible (although this is not the case for everyone); therefore there have been no studies conducted to further explore this topic, as it is easier to eliminate any risk of transmission by strongly encouraging the use of formula and discouraging breastfeeding, hence the strongly-worded warnings on HIV medication bottles.
After receiving this information from the infectious disease doctor, it sent my head spinning. I was excited about the possibility of being able to breastfeed (I had been undetectable for two years), but I was also afraid of the potential risk of transmission to my child, no matter how small. I was aware that the risk of transmission was negligible and had even been told by my infectious disease doctor that the benefits of breastfeeding far outweighed the risk of transmission. However, there were so many sources (and people) discouraging me from breastfeeding and encouraging me to "not take the chance" and use formula instead. I was very confused about what decision I would make, and all the way up to the day of my induction I'd decided I would use formula instead of breastfeeding. While I was in labor, I had a conversation with one of my nurses regarding the internal conflict I was experiencing wanting to breastfeed my child, wanting to make the best decision possible for my child, and the pressure I felt to use formula due to the stigma of living with HIV and breastfeeding (not to mention the pressure society puts on mothers to breastfeed, in general!). There was so much going on in my mind along with the fact that my body was actively in the process of delivering a human.
I ultimately began feeding my daughter formula after her arrival, a formula suggested to me by a nurse to be "the closest thing to breast milk." As I fed my daughter the formula, I couldn't help but acknowledge the strong feeling that this wasn't the path I was meant to choose for my daughter (every path a mother chooses for her child is valid and unique to them). I kept telling my husband that I felt as though I was supposed to be breastfeeding. I felt my milk starting to come in and finally, late on the first night of my daughter's life, I decided to ask my nurse if I could speak with a lactation consultant as soon as possible. She stated that she would put in the request and I eagerly awaited to hear back, but it wasn't until the next day that I was able to meet with her.
How did you gain the support of your health care providers to breastfeed when women living with HIV in the US are so routinely discouraged from doing so?
I think one of the biggest factors in my decision to breastfeed was the encouragement coming from my infectious disease doctor to do so. He stated that, should I choose to breastfeed, he would follow both my and my child's health throughout the breastfeeding period and would test my child's blood every two months to ensure that there had been no transmission. He would also continue to test my blood to ensure that my viral load remained undetectable. When my daughter was born, he visited us at the hospital (the hospital was part of the same practice as the infectious disease clinic and essentially across the street). He congratulated me on the arrival of my daughter and asked whether or not I was breastfeeding. When I replied that I had decided to feed with formula due to fear of stigma, he was supportive of my decision. However, as I'd mentioned before, I eventually decided to acknowledge my maternal instincts and request a consultation with a lactation specialist.
When meeting with the lactation specialist, I explained that I was living with HIV and undetectable (since 2016) and that I wished to receive support with breastfeeding my daughter. I explained the PROMISE studies to the specialist and requested that she consult with my infectious disease doctor, as he would be able to provide her with additional information regarding the negligible risk of transmission through breastfeeding if mother was undetectable/baby was taking AZT. The lactation consultant and head nurse returned from consulting my infectious disease doctor via phone call. I held my breath as I awaited their response. My mother, mother-in-law, and husband were also present and I could feel the tension in the room. Then, to my surprise, the nurse said "Well, after speaking with your doctor I have learned so much that I did not know before. I am COMPLETELY ON BOARD! I agree that the benefits of breastfeeding far outweigh the risk of transmission to your baby, which is nearly zero, and I will make sure we get you a pump as soon as possible so that we can encourage your milk to come in." The lactation consultant also stated that she had told the student shadowing her for the day that she was witnessing history in the making: the beginning of a future for women living with HIV who wish to safely breastfeed their children. I was completely overwhelmed with happiness. I was so glad that I chose to follow my maternal instinct and advocate for myself and my child. I was also extremely nervous, but very determined.
You've acknowledged that your experience of advocating for yourself and gaining the support of your health care providers to breastfeed as a woman living with HIV may have been very different if you were a Black woman or a woman of color. Can you speak to that?
Absolutely. The rate of maternal mortality in the United States for Black women and women of color is historically and currently significantly higher than the rate of maternal mortality for white women. This has nothing to do with differences in biological or anatomical make-up due to race or ethnicity. This is due to systemic racism. This is due to Black women and women of color not being heard and not being cared for appropriately by their medical health care professionals. This is not me asserting that this is the case for ALL practices and ALL health care professionals, but it is me asserting that this problem exists in our country and that the lives of women and mothers are being lost at an unforgivable rate due to it.
When I say that my experiences as a white woman advocating for myself and my child may have had a different outcome if my race were different, it is because in no way did me being white make the process any more difficult. In recalling all of the events that occurred from the moment I gave birth to my daughter to the moment we received the final test confirming that she was HIV-negative, I experienced bias due to the stigma associated with HIV from many individuals with loaded, uneducated opinions. Never once did I also have to navigate dealing with racial bias on top of that. If I did, I imagine that the journey for myself and my daughter would have been significantly more difficult. That is neither fair nor acceptable. Advocacy is so important to ensure that all mothers living with HIV are receiving appropriate, substantial health care, but most of all it is extremely important for our Black sisters and sisters of color. Our system was built to work against them and it's imperative that white women who are advocates do our part to speak up against the injustices that exist within the system (and with family, friends, and strangers). We must make it our work to uplift the voices of Black women and women of color on a daily basis.
Outside of working with your providers, what kind of personal support system did you have?
Honestly, my biggest source of support came from my husband, as he's my biggest ally. I wanted and needed him on board, most of all, as my daughter's father. That included having the very difficult, but necessary "what if" conversations. We knew the risk of transmission was very, very low, but we still understood that the risk could not be technically asserted as zero. There was SOME risk involved, no matter how small – so we were forced to consider every potential outcome of our decision. My husband is pretty well-known for being extremely honest about his opinions. I've never had to pry information from him in regards to his position on a given subject. One conversation I remember very clearly having with him is one where he admitted that he was scared, but that he was prepared to support whatever decision I wanted to make as my daughter's mother. He stated that if the dreaded "what if" were to become a reality, should our daughter acquire HIV, she would be "just as strong as her mother," she would be loved, she would be cared for, and she would always be our beautiful miracle.
In the beginning of our journey breastfeeding our daughter, she did not latch immediately and I had to pump her milk and feed it to her in a bottle. My husband did some (a lot of) research on HIV and breastfeeding and came across "flash heating" as a method used commonly in Africa to kill any existing virus in breast milk. This method is achieved by exposing the breast milk to boiling temperatures for a short period of time before offering it to baby. We put my expressed milk into an uncovered glass mason jar, set it in a pan of water (the water surrounding the jar of milk, but not entering it) and brought that water to a boil on the stove. We then removed the jar of milk from the boiling water, allowed it to cool, and served it to our daughter in a bottle. We did this for approximately the first two months of my daughter's life FOR EVERY FEED.
Many guidelines around breastfeeding while living with HIV recommend exclusively breastfeeding, meaning no supplementation of formula to make up for a low supply or for any other reason. That being said, it was extremely difficult managing producing enough milk for my daughter when she needed it and flash heating it before serving it to her. Both my husband and I were very, very tired the first few months of her life before we decided to discontinue the flash heating, my daughter finally latched, and nursing became a part of our breastfeeding journey. I'll elaborate further on that transition later in the interview.
The threat of HIV criminalization remains a significant problem for people living with HIV, including around breastfeeding. We've heard many women (especially Black women, who are already unjustly targeted for many forms of criminalization) express concern that their baby might be taken away by child protective services (CPS) if they choose to breastfeed. Was that ever a concern for you?
Yes, it was. My daughter was hospitalized for jaundice a few days after she was born. Checking my daughter into the hospital was the second time I would have to explain to medical professionals that I was living with HIV, undetectable, and choosing to breastfeed my child. I walked the physician assistants (there were four or five of them) and the attending doctor through the conclusions from the PROMISE studies, my undetectable viral load history, and the extra protection that was being provided by my child taking AZT every 12 hours daily during the breastfeeding period.
I also provided the contact information for my infectious disease doctor, who managed my own care as well as the care of my daughter, for reference and collaboration. The response from the physician assistants and attending doctor included many head nods and "mhm"s. Regardless, I was permitted to express milk for my daughter and feed it to her during her stay in the hospital. My daughter still was not latching, so I was either attached to a pump or feeding my daughter a bottle around the clock. While in the hospital, I requested to speak with a lactation consultant to receive some support with our latching issue.
At one point, a physician's assistant visited our room "to check up on Aurora" and stated that her color appeared to be improving with the light therapy. She also stated that she informed the lactation consultant on staff that I would like to receive some support, and that the consultant initially refused to work with me due to my HIV status. The assistant stated that she explained the statistics to the consultant and that all of the assistants responsible for my daughter's care "were okay with it." I later met with the lactation consultant who stated to me that she was unaware of the statistics she had just learned from the medical professionals regarding HIV and breastfeeding, and added that I would need to be very careful of common difficulties whilst breastfeeding, such as cracked nipples, because they would expose my daughter directly to my blood and put her at risk of transmission.
My interactions with the consultant felt very forced and I couldn't help but think that this support I was receiving was coming from a place of extreme genuine worry and concern (albeit from lack of education regarding the virus). For the first time as a mother, I felt tainted by my diagnosis. It was similar to the feelings I'd had when initially diagnosed and throughout my journey accepting my diagnosis, only this time it was in response to "not being able to provide the best for my daughter." I thought many times, "this would be so much easier/better if I did not have HIV."
When my daughter was discharged from the hospital, the attending doctor and the (four or five) physician assistants all lined up in a line (similar to a Rockette kickline), although not as jovial) to summarize my daughter's diagnosis upon admittance, the care received, and the outcome. At the end of his summary, he stated that although he had been made aware of the findings of the PROMISE studies by myself and my infectious disease doctor (whom he'd contacted over the phone), it was his duty as our care provider to inform us that the recommendation from the CDC to best prevent transmission of HIV from mother to daughter was to not breastfeed and to instead feed with formula. He stated that if transmission should occur due to my decision to breastfeed, he as a care provider would feel responsible; therefore, he "needed to let me know the leading recommendation in the United States." I thanked him for his care and we packed up to go back home with our healthy baby girl.
Fast forward to a few weeks into our breastfeeding journey, I was experiencing symptoms of mastitis. I reached out to La Leche League, a breastfeeding support line for women. I called in, explained the struggles I was facing, and also explained that I was exclusively pumping for my daughter partly due to latching issues, and that my husband and I were flash heating my breast milk to further decrease any risk of transmission (yes, I did disclose my status to her). She did offer me some advice and also added that she had recently attended a La Leche seminar in her home state, Oregon, where she was instructed by the leader of the seminar to report all mothers who disclose an HIV diagnosis and confirm that they are breastfeeding to CPS. She said that "the rules in Virginia must be different." Inside I was wondering if after the phone call ended I would be receiving a phone call or visit from CPS … Thankfully that never did happen.
However, if I were a Black woman or a woman of color, I would not be surprised if I'd begun receiving unwarranted criminalization and/or calls to CPS from the moment I'd asked to speak to a lactation consultant in the hospital. Unwarranted criminalization is unfortunately not uncommon for Black women and women of color regardless of HIV status, and it deters mothers from exploring breastfeeding as an option for themselves and their children. It also puts the mothers who chooses to breastfeed in a dangerous position, as they are afraid to reach out for breastfeeding support in fear of losing their child. They are ultimately left to suffer alone or attempt to figure out any complications they may experience during breastfeeding by themselves. Postpartum and motherhood is hard and many mothers also suffer from postpartum depression. No mother should ever have to carry the weight of everything that comes with postpartum alone – but they do, often. This is not okay. The system needs to change. Our country must change. We, as women and advocates, must do whatever we can to stand up to the injustices we witness and to uplift the voices of Black mothers and mothers of color so that this does not continue to happen.
Did you and your provider develop any specific precautions or guidelines around breastfeeding (for example, if you got mastitis)? Were you in communication with him a lot?
Honestly, I never received extensive guidelines from my provider. In the hospital I was told to be wary of things like cracked nipples, but I was never provided with a clear "if this, then this" protocol. I did a lot of research myself and, as I discuss below, I did experience complications when exclusively pumping. My symptoms seemed to match most with a mastitis diagnosis, and I made an appointment for myself, as I was in severe pain and did not want to increase any possible risk of transmission to my daughter. I was prescribed an antibiotic for a "bacterial infection" and continued to experience symptoms after being on the medication for over a week. I continued to self-advocate by scouring the internet for advice and reaching out to La Leche League, and eventually I was able to find relief through salt water soaks.
Around the time when my daughter turned three months, she finally latched and was able to nurse effectively. At this time, my husband and I decided to discontinue flash heating the breast milk due to the overall stress of trying to keep up with my daughter's needs while pumping and flash heating. My infectious disease doctor also assured me that I did not need to flash heat the milk, as I continued to be undetectable and adherent to my medication and my daughter continued to take the AZT. He explained that the process of flash heating not only killed any free-flowing virus that may be in the milk (which, theoretically, should not be a concern due to my undetectable status), but it also destroyed some of the antibodies that made breast milk so beneficial for the baby. After transitioning over to nursing, I was happy to be able to share that close relationship with my daughter and I also felt confident knowing that she was getting all of the beneficial properties that my breast milk had to offer her.
My daughter and I visited our infectious disease doctor every couple of months. The visits themselves were enjoyable, as everyone at the office was overjoyed to see my daughter and how she'd grown – there was a lot of support. The only downfall was having my daughter's blood drawn and seeing her in pain … That part was hard. I had to keep reminding myself that it was a quick ordeal and that it would be over soon. My daughter was a tough cookie, though – some moments of crying and then right back to her smiling demeanor. We also were lucky enough to be paired with a very talented pediatric phlebotomist who was able to draw blood on the first attempt every time, and although I know he did not enjoy sticking my daughter any more than she enjoyed being stuck, he did his job quickly and efficiently and enjoyed the moments afterwards when my daughter was her jovial self again.
What made you decide to share your experiences around breastfeeding while living with HIV? In doing so, what do you hope to accomplish?
I decided to share my breastfeeding experiences as a woman living with HIV to raise awareness that it is a possibility for other women, as well. The first place I shared information regarding breastfeeding was in an online support group for women living HIV. The influx of messages I received from women living with HIV who were unaware that they could even give birth to a child without transmitting the virus was overwhelming. I thought, "This is not okay." This inspired me to become public regarding my decision to breastfeed my child and to do my very best to relay the information I'd acquired during our journey, as well as my personal experiences and complications.
It's important that this information be released to encourage more research and to demand support from health care professionals – that includes educating the professionals, as well. All women living with HIV deserve to know that if they achieve an undetectable viral load for an extended period of time and are adherent to their medication, then breastfeeding CAN be an option for them; and they deserve information and support regarding the topic from educated providers.
At The Well Project, we believe there is a lot of work to be done to change the narrative around breastfeeding in the US. What do you think are the most important and most immediate things that need changing? More research? Policy changes? Health care provider education? Advocacy on behalf of women living with HIV? Something else?
ALL OF THE ABOVE. I just think it's a matter of constructing a plan for how each of these things should be addressed. Research needs to be actively happening in the United States, as our standards for an undetectable viral load vary from other countries; therefore, we are in need of data specific to our standards. Recently, the CDC has included a clause to their breastfeeding guidelines that states if a mother living with HIV should choose to breastfeed, they should be instructed by their medical professionals on how to do so safely. Formula is still the leading recommendation; however, this is an acknowledgement that breastfeeding may still be an option that mothers living with HIV choose, and that they should receive support from medical professionals. This is progress. Criminalization laws targeting mothers living with HIV who choose to breastfeed should be lifted and replaced with support. All health care providers should be educated on U=U and what that means in terms of breastfeeding, as well as the importance of using ethical language when working with individuals living with HIV. Advocacy should grow and flourish as we all continue to uplift one another by sharing our stories and experiences, and do what we can to educate others on how to be better allies.
Is there anything else you want to share with us about your journey?
Yes! I am happy to say that I shared 14 wonderful months of breastfeeding with my daughter and she has been confirmed HIV-negative. She is very healthy, happy, and thriving. I also am 32 weeks pregnant with my son and he's expected to arrive by October 8, 2020. I am planning to breastfeed my son and have been open with my providers about my decision to do so. So far, I have received a lot of support all around! It feels great to report back about my daughter and let them know that our journey was successful. It also seems as though more care providers are aware that breastfeeding can be a safe option for mothers living with HIV. This hopefully means that support for mothers will also increase, as breastfeeding can be a difficult journey, deserving of much guidance and support.
I also have made the decision to speak with my care providers about the option to go into labor naturally. In the United States, being pregnant and living with HIV automatically classifies you as a "high-risk pregnancy". Protocol for high-risk pregnancies is to induce at week 39 to ensure that no complications occur between week 39 and week 40. I was induced at week 39 with my daughter and because she was not ready to greet the world yet (I was 0% dilated, 0% effaced), my labor lasted over 30 hours and birthing was very complicated and nearly ended in an emergency C-section. During an appointment for my current pregnancy, I stated to my OBGYN that I had been undetectable since 2016 with no increases in my viral load, and I asked about the possibility of going into natural labor with my son. So far the OBGYNs that I have spoken to about it are on board and so is my doctor! They all encouraged me to continue having conversations with my care providers about my desire to go into labor naturally (at the practice where I receive prenatal care, you alternate OBGYNs for every appointment, as it is not certain who will be working at the time when you go into labor and it is important that all OBGYNs at the practice are familiar with your care plan). So, currently, the plan for my son and me is to experience natural labor (unless he decides to camp out past 42 weeks, then I will be induced) and to breastfeed immediately after birth while in the hospital. I plan to report back with my experiences and I'm hoping they will all be positive!
Also, I plan to continue to share my experiences, have open conversations with others, and advocate in every way possible as a woman and mother living with HIV. Only recently have I discovered my voice as an advocate, and I am so thankful to have been connected to a network of such strong, powerful women who will listen and share, as well. The support and love I have experienced being a part of The Well Project and blogging for A Girl Like Me is so welcoming and warm. I am so thankful for each and every one of you and I look forward to continuing to grow with you all.
- Breastfeeding and HIV in the Era of U=U: Highlights from a Growing Discussion
- Conversations at Adherence 2019: Advancing Discussions of Infant Feeding Choices in the U=U Era
- Can I Breastfeed While Living With HIV? An Overview of Infant Feeding Options (fact sheet)
- Breastfeeding and HIV: What We Know and Considerations for Informed Choices (webinar)