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 Infant and Young Child Feeding in Emergencies during National Breastfeeding Month

It’s Week Three (August 16-24) of National Breastfeeding Month, recognized as Spotlight on Infant and Young Child Feeding in Emergencies by the United States Breastfeeding Committee (USBC). 

Among the many effects of the novel coronavirus, the pandemic has truly exposed our nation’s deficiencies; one of them being emergency unpreparedness. 

Years ago, Federal Emergency Management Agency (FEMA) called Hurricane Katrina “the single most catastrophic natural disaster in US history.”

In preparation for the storm, the government organized an alternate site for the Super Bowl but failed to employ an infant feeding in emergencies (IFE) plan, Healthy Children Project Executive Director Karin Cadwell reports. In the aftermath of the catastrophe, pets and exotic animals were accounted for, but mothers and infants were separated from one another as hospitals were evacuated.

In 2016, Healthy Children Project, Inc. (HCP)  convened an Expert Panel to complete the World Breastfeeding Trends Initiative (WBTi), an international tracking, assessment and monitoring system for national implementation of the Global Strategy on Infant and Young Child Feeding, as originally reported in Underdeveloped plans for infant and young child feeding during emergencies

WBTi Panel Members

The USA scored 0 out of 10 points on WBTi Indicator 9, which measures implementation of actions to protect infant and young child feeding (IYCF) during emergencies.

WBTi originator Dr. Arun Gupta challenged HCP to conduct a state-by-state review of WBTi indicators that can be measured on a state level. 

The US Expert Panel reconvened in 2017 to complete the United States of America and U.S. Territories 2017 Assessment Report. Results further show the absence of state policies ensuring babies and young children are safely fed during emergencies.

HCP’s Cindy Turner-Maffei says that the lack of well-developed plans for protecting IYCF during emergencies was one of the most worrisome findings of the U.S. WBTi Assessment.

She explains: “Scores above two points were rare, and most of the points scored regarded funding allocation for emergencies, not for specific inclusion of the needs of infants and young children in emergency plans.”

Puerto Rico and Texas scored 0 out of 10. New Jersey and Mississippi scored 2 out of 10. Oklahoma 3 out of 10. Connecticut took the lead at 6 out of 10.

“Panel members were struck by the fact that few of the states and territories that had recently experienced significant disasters were among those with significant scores for Indicator 9,” Turner-Maffei continues. “Ironically, some states and territories have well-elaborated plans for the care and feeding of household pets in shelters, but none for infants and young children.”

Photo by Luiza Braun on Unsplash

Although there are always crises occurring, since being thrust into a global pandemic, our nation has had to reevaluate how we care for families with babies and young children. Especially in marginalized populations, poverty, health inequities, and other burdens are amplified during an outbreak or other emergency. 

Carolina Global Breastfeeding Institute states,  “Any crisis presents an opportunity for positive, sustainable change and coordinated involvement of all. #COVID19 taught us that we are all affected and an immediate societal response is required.” 

In an effort to increase awareness and preparation, 1,000 Days— a non-profit working to improve nutrition and ensure women and children have the healthiest first 1,000 days–compiled a list of five things we need to know about breastfeeding in emergencies in a 2018 blog post:

1. Breastfeeding is the safest, most nutritious and reliable food source for infants under the age of six months.

2. Breastfeeding decreases the risk of infection and disease, which is vital to survival in emergency settings.

3. Breastfeeding mothers need (even more!) support during emergencies.

4. When breastfeeding is not possible, immediate support is necessary to explore feeding options and protect the health of vulnerable infants.

5. Preparedness is key to ensure babies everywhere have the best opportunity to survive and thrive. 

Parents and care providers can consult Global Health Media’s video How to Express Breastmilk in situations where hand expression is warranted. 

More recently, USBC has compiled a comprehensive resource page for Infant and Young Child Feeding in Emergencies, including COVID-19.

USBC calls on us to take action by urging policymakers to take three actions to integrate infant and young child feeding into emergency preparedness and response efforts:

  • Expand the Federal Interagency Breastfeeding Task Force to include emergency and infectious disease experts
  • Direct the Federal Emergency Management Agency to ensure breast/chestfeeding people have appropriate services and supplies during a disaster or pandemic
  • Enact World Health Assembly Resolution 12.6 related to infant and young child feeding in emergencies

The CDC offers their guide to disaster planning here

CGBI’s Dr. Aunchalee Palmquist leads Lactation and Infant Feeding in Emergencies (L.I.F.E.) Amid the Pandemic Initiative, an active hub of research, policy advocacy, and technical support with recommendations relating to current emergency situations.

The World Alliance for Breastfeeding Action (WABA) has made available an interview between Dr. Felicity Savage and Dr. Amal Omer Salim which touches on proper breastfeeding support during normal and crisis situations. 

Dr. Savage points out that one of the biggest concerns about breastfeeding counseling during emergent situations is actually getting the counseling to parents. Specifically during the Covid-19 pandemic, Drs. Savage and Salim emphasize that separating mother and baby is not necessary to prevent the spread of the infection from mother to child, and make clear that care providers should follow WHO and UNICEF guidelines

#NBM20 

#IYCFE 

#ManyVoicesUnited

Toxic Stress, Resilience Building, COVID-19 and Breastfeeding

As I write this, I’ve logged exactly two weeks at home in self-quarantine due to Covid-19 with my husband and three children. Technically, we’ve only made it through the kids’ scheduled spring break, but they’ll start an indefinite distance learning journey on Monday.

Our socially-distanced days have been filled with laughter of a couple kinds. The pandemic has offered us the opportunity to connect without the distraction of our robotic, go-through-the-motion schedules. We find simple entertainment: puzzles, charades, tiptoeing along sidewalk cracks. The situation has helped me rediscover how to be playful, and I’ve surprised myself and  kids with genuine laughter (or maybe it’s because I’m utterly deranged) over things that might have otherwise made me blister in anger. 

When I look outside my household, I laugh in discomfort. It’s this disturbed kind of cackle; a psychological response to the panic, the destruction, the trauma, the unknown that this pandemic has burdened the globe with. 

My most recent interviews with Nikki Lee about breastfeeding policy in shelters and Healthy Children Project’s Anna Blair and Karin Cadwell about their upcoming webinar on Covid-19, breastfeeding and resilience went this way: we seemed to laugh more than in interviews before the pandemic hit our country. 

Photo by Toa Heftiba on Unsplash

For me, I laughed because it was a simple joy to hear my friends’ and colleagues’ voices, to connect with those outside my immediate family. But even when the conversations turned dark, still I laughed. I laughed until I actually started sweating. What is the matter with me?

Blair and Cadwell pointed out something about the status of the crisis we’re currently in. When a hurricane tears through a community, we know there’ll be an end to the devastation. With Covid-19, we have no idea when this ends, and that’s sure to threaten mental health

Cadwell shares that while she does not consider herself a joyful person, she often thinks about joyful things in the future. 

“One of the things this has done for me is it has taken away my anticipation of joy,” she says. 

Some will argue that we’ve gained something through the shared experience; we’re together by being apart. “Rediscovered humanity,” in the words of the head of my children’s school.

We’ve lost a lot though too. Lives most importantly and second to that, control. 

In Hidden Brain’s episode An Unfinished Lesson: What The 1918 Flu Tells Us About Human Nature guest Historian Nancy Bristow recounts, “To remember the flu would be to admit to the lack of control that people had had over their own health. It would be to admit that the U.S. was not necessarily all powerful but was like everywhere else in the world subject as victims to something beyond their control.”

Almost a century later, these words ring true. Where there was opportunity for control, or a fair degree of preparedness at least, our nation failed. 

Cadwell has pointed out time and time again that our country has better emergency preparedness plans for our pets than we do for our moms and babies. 

“The unfortunate reality of the coronavirus pandemic is that it has shown how unprepared and underfunded the public health infrastructure in the U.S. is to address the basic needs of our citizens,” Monica R. McLemore begins in her piece COVID-19 Is No Reason to Abandon Pregnant People. 

Now we’re in what feels like an impossible place. 

Kimberly Seals Allers exposes the fact that infant formula quantities are scarce.  

“There, I said it! Cue swarm… I have time,” KSA begins in a Facebook post. “Everybody is talking about ‘choice’ & blasting #breastfeeding advocates until there’s a global pandemic, a panic-induced international run on infant formula & quantities are scarce. Now the ‘just give a bottle’ folks want to teach you how to re-lactate.” 

Doulas have been deemed non-essential, partners of birthing people considered visitors. (Refer to McLemore’s piece above.)

“We are taking so many steps backward,” Blair comments.

She continues: “We have heard so many times, not just locally, but colleagues around the country that there has been a misunderstanding about what the protocols are for babies being born now.  Babies are being automatically separated from their mothers for two weeks in some cases, even if the mother is Covid-19 negative. That is not best for the baby and that is not best for the family. Story after story. It worries us tremendously.” 

A member of the Certified Lactation Counselor (CLC) from ALPP Facebook group shared this account: 

“Mom had baby yesterday and was forced to wear a mask and gloves for all of labor and delivery. She had low o2 sat(91%) when coming into the hospital. No other symptoms. She is now separated from baby. Baby with dad in postpartum room and she in ICU pending covid test. She has not seen baby since and they will not let her until she gets a negative (test pends for 5 days apparently. They gave her a pump but didn’t show her how to use it. She’s a young first time mom and has now pretty much given up breastfeeding and seems highly depressed. She claims the hospital told her the CDC said to quarantine moms away from baby.” 

Later, the member provided an update.

“She’s with him now and he is currently latched <3 she’s still mentally in a dark place but things are looking up now that she’s finally got to hold him skin to skin without gloves or a mask.” 

Another participant suggested that this mother might need timely birth trauma therapy. 

The original poster replied: “I completely agree. She is very flippant and now seemingly unbothered and lacking emotion. Dad is worried and said he’s never seen her like this before.” 

Dr. Amy Gilliland of Doulaing the Doula is raising questions about mother baby separation on her social media outlets.

In one post Gilliland describes the effects of separation after birth: “The infant experiences loss and has a grief response – that’s the only interpretation – Where did my mother go? And it’s a loss they never recover from because their initial impression is abandonment and isolation. We are screwing up their capacity to trust and creating insecurity. We know this from research and therapy with young children, older children and adults. www.birthpsychology.com (also the Alliance for Infant Mental Health)…” 

Photo by Gift Habeshaw on Unsplash

Toxic stress is bubbling up in mothers, babies, families and equally their care providers.

What’s worse, Cadwell explains, is that many of us have accumulated toxic stress over our lifetime and in the current situation, many of our regular stress relief outlets have been stripped from us.   

Gutted by the situation, Cadwell and Blair put together Toxic Stress, Resilience Building, COVID-19 and Breastfeeding, a webinar that focuses on how to build resilience in ourselves and in others. 

“How can we find a resilient future?” Cadwell wonders. 

The webinar refers to Dr. Kenneth Ginsburg’s The 7 Cs: The Essential Building Blocks of Resilience

Healthy Children Project and Health Education Associates are offering the webinar at no cost. Continuing education credits for nurses, lactation consultants and lactation counselors are available.

You can request the free module here

In closing, I offer you this PSA:

“Unless you have prior experience navigating the emotional, psychological, and financial implications of a global pandemic- all while suddenly becoming a homeschool teacher to kids with cabin fever and unlimited snack requests… give yourself some grace.”  

Photo by Miguel Bruna on Unsplash

And one of my favorite quotes, quite applicable when the entire world is becoming unglued, “As long as there is breath, there is hope.”