By Rita Brhel, managing editor and attachment parenting resource leader (API)
When we think of the Attachment Parenting International Principle of Feeding with Love and Respect, what first pops into our minds is a woman enjoying a close breastfeeding or bottle-nursing relationship with her baby or perhaps a family sitting around the dinner table engaged in a lively conversation about the day’s happenings. What many of us don’t picture are the myriad challenges many parents must encounter in order to do what seems to be such a basic part of child-rearing: feed their child.
Unless we’re experiencing a challenge at the time, we don’t think of the working mother pumping her breast milk, the parents feeding breakfast to their son via a stomach tube, or even the parents struggling with emotions toward their picky preschooler. And we certainly don’t think what it must be like for the HIV-positive mother who wants to breastfeed but is opposed by the medical community. But there remains debate about breastfeeding by HIV-positive mothers and whether the mother, particularly in developing countries where there are additional serious risks to not breastfeeding, should breastfeed or formula-feed her newborn.
Even for breastfeeding advocates, breastfeeding by HIV-positive mothers is a gray area. We want all mothers to feel welcomed to nurse their babies, but no one wants to pass HIV to their child through this naturally loving act. When going against what seems natural to us, we have to look at the research — and many of us probably do not fully understand what the studies have found.
It is because of this gap in knowledge and application of that knowledge that Marian Tompson founded AnotherLook as a 501(c)3 nonprofit organization in 2001, separate and unaffiliated with the La Leche League (LLL) International she co-founded more than 50 years ago. The opening statement on the homepage of AnotherLook’s website, AnotherLook.org, says it all: “The issue of HIV and human milk has been clouded by possibly questionable science, lack of precision concerning the definition of breastfeeding, and premature public policy statements.”
Editor’s Note: Attachment Parenting International finds the mission of AnotherLook to be incredibly important to the HIV-positive community. However, API wants to make it clear that this contents of this article do not constitute medical advice and that all HIV-positive women should consult their health practitioners regarding breastfeeding and their child’s risk of transmission. API cannot be held liable for any personal decisions made by readers based on the contents of this article.
I first heard about the monumental hurdles HIV-positive women face in breastfeeding while attending a LLL conference in Nebraska last summer. The speaker was Tompson, and her topic that morning was the nonprofit organization called AnotherLook (at Breastfeeding and HIV/AIDS), which helps to educate both parents and professionals as to the issue of breastfeeding by HIV-positive mothers.
Based in Evanston, Illinois, AnotherLook is dedicated to further its mission to gather information, raise critical questions, and stimulate needed research about breastfeeding in the context of HIV/AIDS. AnotherLook questions feeding strategies based solely on the possibility of virus transmission instead of on maximizing the probabilities for good mother-infant health. The organization calls for clear, published scientific evidence as to the type and manner of feeding that will minimize infant morbidity and mortality and seeks out scientific proof that infectious HIV virus is present in breast milk and is transmitted from mother to baby through breastfeeding.AnotherLook provides presentations, position papers, and recommendations, which can be found at its website.
Tompson spoke about the variety of information related to HIV/AIDS and breastfeeding, such as that the medical community in industrialized countries like the United States advises HIV-positive women not to breastfeed their babies. The guidance is out of fear of transmitting the virus to their child. One story told was of a woman in only the last couple years whose baby was removed from her care until she promised not to breastfeed, because the authorities called the choice to breastfeed over using formula as dangerous mothering.
It is for this reason that AnotherLook exists — to give HIV-positive mothers and health professionals factual information on what we know and don’t know about breastfeeding when a mother is HIV positive, to ask critical questions, and to stimulate needed research. Knowing the importance breastfeeding has in establishing a strong mother-child attachment relationship, you can understand what this organization means to those women with HIV/AIDS for whom AnotherLook provides a voice in exclusively breastfeeding concerns.
A Call to Action
AnotherLook has issued a Call to Action to assure the best maternal-infant health outcomes in relation to infant feeding in the context of HIV/AIDS. This call is needed because current research, policy, and practice, often based on fear, are focused on the reduction of transmission while neglecting the impact on morbidity and mortality. This not only may be misleading but may inadvertently set back critical gains already achieved in public health as a result of the protection and promotion of breastfeeding.AnotherLook acknowledges the possibility that HIV may be transmitted through breastfeeding and that there is an urgent need for feeding guidelines.
In light of the above, AnotherLook calls for immediate action to provide:
Clear, peer reviewed research, with careful ongoing follow-up, which will provide sound scientific evidence of optimal infant feeding practices that lead to the lowest morbidity and mortality.
Concise, consistent definitions of feeding methods, testing methods, HIV infection and AIDS.
Development of research based infant feeding policies which are feasible to implement in light of prevailing social, cultural and economic environments; which address breastfeeding (particularly exclusive breastfeeding) as a critical component of optimal infant health; and which fully consider the impact of spillover mortality/morbidity associated with infant formulas.
Epidemic management from a public health perspective, with the focus on primary prevention, careful, unbiased surveillance, and the achievement of overall population health with the lowest rates of morbidity and mortality.
Evidence-based practices which protect the rights of both mothers and infants including education, true informed consent, support of a mother’s choice, and avoidance of coercion.
Funding to support the above actions and those programs which improve maternal/child health in general such as prenatal and postnatal care, nutrition, basic sanitation, clean water, and education, as well as exclusive breastfeeding until clear scientific evidence supporting the abandonment of breastfeeding is available.
Continued commitment by local and global researchers, policy makers, health workers, and funding bodies to basic scientific, medical, public health, and fiduciary principles in responding to this critical issue.
In summary, AnotherLook calls for answers to critical questions not currently being addressed that will foster the development of policies and practices leading to the best possible outcomes for mothers and babies in relation to breastfeeding and HIV/AIDS.
With the background laid out, let’s turn to Tompson for more information on the past, present, and future of AnotherLook.
RITA: Hi Marian. I recall hearing you say at the LLL conference that, knowing the time and energy and sheer work that goes into building up a successful nonprofit organization as LLL International is, founding another organization was a task that you never thought you would do. What made you decide to pursue the organization of AnotherLook?
MARIAN: It has always been important to me (and La Leche League) that mothers get correct information. In 1997, when WHO [World Health Organization] changed its infant feeding recommendations when a mother was HIV-positive from one where the decision would be made on a case-by-case basis as to whether or not she should breastfeed to one where all HIV-positive women were encouraged to formula-feed if at all possible, I set out to find the studies that backed up this change.
I was looking for the evidence proving that babies who are breastfed by HIV-positive mothers are more likely or less likely to get sick and die than those fed formula mixed with possibly contaminated water, which is common in developing nations with HIV/AIDS epidemics such as parts of Africa.
RITA: What did you find?
MARIAN: We question infant feeding strategies based solely on the possibility of virus transmission instead of on maximizing the probabilities for good mother-infant health. We still don’t know if HIV virus in breastmilk is actually live (infectious), and if it is infectious, if there is enough to infect the baby. We have a team ready to research this and have been looking for a grant to cover the cost.
The challenge is that most people in this field think we already have the answers to these questions.
RITA: How has AnotherLook reached out to professionals and the HIV-positive community?
MARIAN: We have had an international focus since the beginning, calling attention to the difference in recommendations depending on where the HIV-positive mother resides.
We have a private chat list that includes researchers, health professionals, speakers on this topic, health workers working with mothers in Africa, and LLL leaders and others interested in this issue.
We were invited to do roundtable sessions at an American Public Health Association annual meeting, did a poster session at the International AIDS Conference in Toronto [Canada], and our abstract was included in the syllabus of last year’s International AIDS Conference in Mexico City [Mexico]. We have given presentations at LLL conferences, both in the United States and abroad.
We’ve had letters printed in major medical journals criticizing published research.
RITA: Do you have any success stories that stand out of how AnotherLook is able to educate mothers or professionals in a way that changed the course of establishing a breastfeeding relationship when HIV/AIDS is a factor?
MARIAN: We have helped to change recommendations on infant feeding in developing countries from one in which mothers were told to formula-feed if at all possible to one where now all mothers are encouraged to breastfeed exclusively for six months.
About these Recommendations
Our poster sessions have pointed out the lack of evidence in the citations used to back feeding recommendations. The research hasn’t been done that would give us the answers needed about breastfeeding when a mother is HIV-positive.
We have become a resource for women in the United States who have no support group, like drug users and gay people have if they are diagnosed with HIV virus.
We also educate professionals about the assumptions that have long been accepted as facts.
RITA: Where do you see AnotherLook heading in the future?
MARIAN: Continuing to provide information through presentations and our website, while responding to inquiries. Even school children have contacted us. Working to get the research still needing to be done accomplished. Raising funds to enable us to participate in discussions of this issue.
When a director from UNICEF, who initially questioned the need for AnotherLook, attended one of our presentations at an LLL International Conference, she said that AnotherLook should participate in all international discussions because we were including elements that others had overlooked.
RITA: Thank you for your time, Marian. Do you have any closing thoughts?
MARIAN: New online at www.anotherlook.org/updates is Rodney Richard’s letter questioning the wisdom of mandatory testing of newborns for HIV. Richards is a bio/organic chemist who worked many years for Amgen, the world’s largest biotechnology company, specifically in the area of HIV test development.
His letter is in light of legislation passed in Connecticut, Illinois, and New York that require mandatory testing for HIV in newborns. Many states, such as Arkansas, Michigan, New Jersey, Tennessee, and Texas, have laws requiring HIV testing of pregnant women as part of routine prenatal care and then testing of newborns if the HIV status of the mother is unknown. We will probably see this legislation being considered in other states.
Also in the works are:
A detailed paper on WHO’s changing recommendations on infant feeding when a mother is HIV-positive
A report from the session we put on at the LLL International 50th Anniversary Conference, “Breastfeeding and HIV: What Works, What Doesn’t, What Has to be Changed,” with Cathy Liles, BBA, CPA, MPH, IBCLC, a member of the LLL International Board of Directors, and Ted Greiner, PhD, coordinator for the World Alliance for Breastfeeding Action Research Task Force.
About Marian Tompson
Marian was one of seven women who co-founded La Leche League as a way for women to seek out support and education in breastfeeding as the best way to feed infants. LLL’s beginnings came at a time in history, 1956, when women were advised to forgo breastfeeding as an infant-feeding option. At this time, the U.S. breastfeeding rates dropped to only 20%.Marian had an instrumental role in the nonprofit organization of LLL, serving as president for 25 years. In 1958, she started the newsletter that eventually became the magazine we know today, New Beginnings, and in 1973, she began the annually held Breastfeeding Seminar for Physicians.
Today, besides her work with AnotherLook, Marian is involved in the LLL Founders’ Advisory Council and the International Advisory Council for the World Alliance for Breastfeeding Action, and is vice chair of the United States Breastfeeding Committee. She and her late husband Tom raised seven children. Marian also has 16 grandchildren and five great-grandchildren.
API’s Connection >> Reedy Hickey, IBCLC
AnotherLook and API share a member of their respective Boards of Directors. Hickey not only provides leadership to both organizations but also advocates breastfeeding as a local La Leche League leader and Georgia’s LLL professional liaison. She is the mother of two grown children and 32 foster babies, and practiced AP with each.