To know is to do: retired nurse dedicates time to humanitarian aid in East Africa bringing awareness to the paradox of direness and vibrancy

Some days Susan Gold, RN, BSN, ACRN misses her ignorance. Since 2003, Gold has embarked on over 30 trips to various locations in East Africa where she teaches sexual and reproductive health and offers humanitarian aid.

Recalling one of her first visits to a clinic in Nairobi, Kenya, Gold describes a young mother, around 18-years-old, who arrived holding her severely malnourished infant against her breasts infected with such severe mastitis that her skin had split. This mother had been thrown out of her home for being HIV-positive and was breastfeeding and formula feeding her baby.

[Some background: Infant feeding has been complicated by the HIV epidemic. In the early 2000s, Gold explains that HIV-positive women were taught to formula feed to lower the risk of transmission to their babies, but with little to no access to clean water, babies were becoming severely ill. What’s more, in societies where breastfeeding is the norm, exclusive formula feeding is often an indication of one’s HIV status, which remains highly stigmatized. And formula is expensive, so many mothers choose mixed feeding, increasing the rate of HIV transmission, because formula irritates the GI system and gives the virus a pathway. By 2010, WHO issued new recommendations that stated that all mothers who tested positive should receive effective antiretroviral treatment (ART) which could lower risk of transmission during exclusive breastfeeding to virtually zero. In 2016, WHO extended the recommended duration of breastfeeding for HIV-positive mothers to 24 months. Effectiveness is dependent on consistency though, and Gold explains that mothers can develop resistance because there isn’t always access to ART.]

Gold was able to give the mother antibiotics, but the care that she and her infant required was beyond what Gold could offer. Considering the dyad’s condition and Gold’s limited resources, she says she’s certain that they died.

Reflecting on the suffering she witnessed and lives lost, that’s when Gold misses her ignorance most, but she says, “To know is to do.”

“For me it’s not a news story I can ignore, it’s names and faces,” she remarks.

In 2007, Gold received a Fulbright Grant to evaluate a reproductive health curriculum for HIV-positive adolescents. In 2017, she was awarded a Mandela Washington Fellowship Reciprocal Exchange Award to collaborate with Sicily Mburu, a Kenyan physician who co-founded AIDS No More. [Read more: https://ghi.wisc.edu/talking-health-out-loud-how-volunteering-led-to-life-saving-strategies-for-teens/]

Most recently, Gold spent several weeks in Dar es Salaam, Tanzania on a Nelson Mandela Fellowship Reciprocal Exchange Fellowship Grant where she partnered with Dr. Omari Mahiza, a pediatrician at Amana Regional Referral Hospital, focusing their efforts on combating pediatric malnutrition and education on family planning.

 

Shattering stereotypes 

Gold has found that most Americans hold a “shallow view” of the continent. Her frustration with the stereotypes associated with Africa runs deep.

“It’s either starving children or a safari,” she begins. “It’s so painful for me to see that displayed so many times. There is such a tendency [in America] to dehumanize people who are not like us… We set ourselves as the standard. Their culture is not a failed attempt to be our culture. Success doesn’t have to look like us or be measured against us.”

Alongside her humanitarian work, Gold hopes to shatter the stereotypes, to bring awareness to the paradox of direness and vibrancy in East Africa.

Gold reminisces: “I love the African sun on my face, the bright colors and motion, the culture that is built around the family and friends, that you’re never expected to do it alone, the  generosity of spirit,  the sounds and smells, the warm welcomes and the optimism.”

Acutely aware of “an inherent imbalance of power” and the concept of White Saviorism, Gold uses the Swahili term Tuko sawa, which means “We are all the same”, as the foundation of her work.

We all want healthy children and families and a future with opportunities to provide long, healthy, prosperous lives, she expounds.

Beyond this core belief, Gold says that she always develops relationships with the people she works with.

“I educate myself on the origins and current status of their culture. I don’t tell people what to do, I share my experiences and expertise. I always learn from them.”

 

Doing more with less 

Ingenuity is something she’s gathered from working alongside East Africans.

For instance, Gold was struck by the engineering of incubators for very sick babies at  St. Joseph’s Hospital in Moshi, Tanzania.

If there is electricity, she explains, the heat is controlled by the number of light bulbs lit. The wood absorbs the heat, the aluminum components absorb and reflect heat, the mattress absorbs heat but also protects the baby, and the lid retains the heat but allows for monitoring of the baby. Mosquito netting is fashioned around the system.

Gold notes that Kangaroo Mother Care (KMC) is practiced for almost all premature babies, but it’s not common among sick babies. [Read about skin-to-skin efforts just north of Tanzania here:  https://www.ourmilkyway.org/skin-skin-gulu-uganda/]

 

Hunger: hidden and stark 

A recent Lancet Global Health Publication, Revealing the prevalence of “hidden hunger”, released estimates of two billion people worldwide with one or more micronutrient deficiencies, noting that this is a gross underestimate. The hunger and deficiencies that Gold and her colleagues witness are rarely hidden and often quite obvious.

A severely malnourished child holds onto one of the toy cars that Gold collects and brings for the children at the clinics.

Breastfeeding is important in the prevention of different forms of childhood malnutrition, including wasting, stunting, over/underweight and micronutrient deficiencies. Tanzania scores quite high in the World Breastfeeding Trends Initiative (WBTi) World Ranking.

Gold observes that all of the women breastfeed in the low-income neighborhoods she visits.

The struggle, she says, is getting enough nutrition for the women to sustain milk production and have energy to feed their babies. During her most recent visit, Gold reports that almost none of the 35 families had food in the home.

Reporters of the new estimates for micronutrient malnutrition point out that processed fortified foods and micronutrient powders can be an easy answer to hunger, but they don’t create sustainability of local and indigenous foods and create conflict of interest issues with industry.

Gold adds that low income community members can’t afford to buy industry developed foods consistently. Lack of access to clean water is also a barrier.

“And you can’t depend on outside groups to sustain you,” she continues.

“We didn’t see any processed food at all because there is no market for it,” Gold says of visiting seven different neighborhoods in the low income region of Dar es Salaam. Instead, small markets with locally-grown fruits and vegetables prevail, but access to protein is a challenge.

As medically indicated, ready-to-use therapeutic food (RUTF) packets of fortified peanut butter issued by UNICEF are given out through health clinics. But Gold notes that sometimes parents sell these packets for money.

 

A challenge but not insurmountable 

North of Dar es Salaam, in Moshi, Gold brings a portable printer that doesn’t require Wifi to the small hospital where she volunteers. She gifts each postpartum mother a printed 4×6 photo of herself and her baby.

“You don’t know how many of these babies are going to survive due to the high infant mortality rate.”

There’s a long moment of silence between us on the video call.

Then Gold expresses her frustration and anger,  “The world can fix this, but chooses not to.”

She urges us to educate ourselves and others. Vote for people who have a vision of the world as one world, she says.

Last month, the President signed into law H.R. 4693, the “Global Malnutrition Prevention and Treatment Act of 2021,” which authorizes the United States Agency for International Development to undertake efforts to prevent and treat malnutrition globally.

For those interested in making financial contributions or donations like baby clothes, children’s  books, or toy cars, email Gold at talkinghealthoutloud@gmail.com.

Follow Gold’s organization Talking Health Out Loud on Facebook here.

For an interesting discussion on Numeracy Bias, check out this episode of Hidden Brain. Numeracy bias is described this way: “…When you see one person suffering, you feel like, ‘Oh, I can do something for that person.’ But when you hear that a whole country has a refugee crisis, you tend not to get involved because you feel like, ‘Well, this is overwhelming. I don’t think I can do anything about this, so I’m not going to engage.’…It turns out that people who have experienced a high level of lifetime adversity are immune to this bias.”

 

Other resources

Micronutrient Deficiencies

UNICEF Child Food Poverty

UNICEF No Time to Waste

UNICEF Fed to Fail

Spotlight on Fédora Bernard, Program Officer at The Right Livelihood Foundation

Fédora Bernard is currently Program Officer at The Right Livelihood Foundation, an organization established to “‘honour and support courageous people solving global problems’… now widely known as the ‘Alternative Nobel Prize’”. 

Bernard presenting in Rio.

Before transitioning into her work at The Right Livelihood, Bernard served as Geneva Association for Baby Food and International Liaison Office of the IBFAN Network (GIFA) Program Officer beginning in April 2019, having just newly graduated from the Institut des Hautes Etudes Internationales et du Développement with a Masters in International Affairs. 

This week, Our Milky Way is pleased to share a Q&A session with Bernard. 

Q: Please share a few highlights during your time with IBFAN. 

A: I am deeply passionate about human rights and GIFA was specialized in exactly that. I think that throughout my time at IBFAN, some highlights would probably be the sessions of the Committee on the Rights of the Child that I attended and advocated at, the World Health Assembly, the fifth session of the Open-ended intergovernmental working group on transnational corporations and other business enterprises with respect to human rights and of course, the World Breastfeeding Conference in Rio. They were all avenues where we could raise awareness and advocate for better national policies.

Q:  What would you consider your greatest triumph with IBFAN?

A: I am not sure I could speak of triumph, at the end of the day my time with IBFAN was quite short and all I did was trying to keep up with the amazing work that has been done by the Geneva office for the past 40 years. Nevertheless, I am very proud of the achievements with the Committee on the Rights of the Child, as during my time with IBFAN, “breastfeeding” was mentioned in almost all concluding observations.

Q: In November 2019, you had the opportunity to present IBFAN’s Green Feeding documents. What was that like? How was it received by participants at the World Breastfeeding Conference? 

A: It was an incredible experience, it was an honor to prepare this with Alison Linnecar, who wrote the document and to present it along with experts in the field. I don’t think that I can define myself as an expert, let alone a breastfeeding expert, but I am starting a career in advocacy. I therefore decided that I wanted to emphasize how the Green Feeding Documents could be used as an advocacy tool from an environmental perspective. Therefore, while Alison explained the science behind all of it, I focused on the link between breastfeeding and human rights, more in particular how it can be used in relation to the right to a safe, healthy environment. At the end of the presentation, I was so happy to see that most people in the audience wanted a copy of the green feeding documents…I thought that 30 copies would be enough, but clearly, I was wrong! I wish I had brought more.

Jose Angel Rodriguez-Reyes, expert of the Committee on the Rights of the Child pictured alongside Bernard.

Q: In your piece BREASTFEEDING: BEYOND “WHAT IS BEST FOR YOUR CHILD”, you mention the WHO/UNICEF Global Strategy on Infant and Young Child Feeding to Protect, Promote and Support Breastfeeding. We have the framework for better global health outcomes; What is holding us back? Is there one significant barrier standing in the way of a better world? 

A: I believe that from a political perspective, two things are holding us back: The first being the patriarchy and political systems dominated by men. As long as women will not be allowed to play a greater role in global health governance and domestic politics, public health issues such as breastfeeding or issues surrounding menstrual health will not be given the right amount of attention. 

The second element is political will, which is deeply related to the first. Breastfeeding is only seen as a public health issue in developing countries, and aggressive marketing from the formula industry has managed to convince women themselves that they are actually more empowered if they don’t breastfeed. Breastfeeding is thus seen as a weight imposed on them rather than a right that should be protected, promoted and supported by governments. In some societies, it is indeed currently a real hurdle for women to achieve their breastfeeding goals but instead of women in their breastfeeding journeys benefiting from policies, they are given a bottle. I am of the idea that improved breastfeeding policies are not only a matter of public health but also of women’s rights. 

Q: Any advice on how to navigate a climate where people dispute basic facts?

A: That is a very difficult question…Especially because those disputing basic facts are often deeply attached to their position and will give you alternative “facts”…I believe very much in trusted sources, and would always advise these people to check their sources and question them. For instance, if someone shows me an article from the industry containing “facts on breastfeeding” I would draw their attention on why this article could be biased and not based on adequate scientific evidence.

Q: Breastfeeding is a topic that spans across all disciplines. Will you please give us a glimpse into the work you’re doing at The Right Livelihood? 

A: The Right Livelihood Foundation honors and supports courageous people solving global problems, in all disciplines. IBFAN is actually one of them. With civil society space shrinking all over the world, human rights defenders are facing increasing difficulties, which is very true also for breastfeeding advocates. My work at the foundation therefore consists in using the advocacy skills that I developed with IBFAN, to support laureates all over the world.