Turning regret into advocacy

When Ashley Albright’s baby Marcus Jr. (MJ) was diagnosed with Down syndrome, she was “crushed.”

I felt what I thought was my heart shattering. I could not believe it,” she writes on her blog Just the Albrights.

It was her husband who helped change her perspective. After a conversation with him, she no longer felt defeated by the diagnosis; she felt hopeful and enthusiastic about her son’s future.

While Albright has embraced the diagnosis, she still has regrets about her infant feeding story.

We had a very rocky breastfeeding journey and stopping at three months is still one of my biggest regrets!” she exclaims.

Although Albright planned to exclusively breastfeed, she reports that the hospital offered “absolutely no support.” During her son’s eight-day stay in the NICU, no one encouraged her to provide breastmilk for her baby; actually, no one had a conversation with her about breastfeeding at all. Still, determined Albright pumped milk for MJ.

“I grew tired of pumping though…Because of his Down syndrome, we were terribly busy with doctor appointments, therapy sessions, [and so on.]”

Albright has since had another son and a daughter. She breastfed her second child for 34 months and continues to exclusively breastfeed her eight month old daughter.  She points out that she birthed her daughter at a different hospital than her sons and acknowledges that the breastfeeding support was “out of this world amazing.” She also utilized the Tennessee Breastfeeding Hotline, staffed by CLCs and IBCLCs.

“Out of all of my children, MJ needed [my milk] the most,” Albright says. “I regret that I did not supply him with the best.”

“Months later, I would pump whenever I was engorged with my second son,” she goes on.  “I would offer that milk to MJ, but he would refuse it.”

Now that Albright has several years of breastfeeding experience, she says that friends, family and co-workers come to her for breastfeeding advice.

“Plus, I absolutely love breastfeeding” she adds. “I want to be there to encourage and educate other moms.”

Accordingly, Albright recently completed The Lactation Counselor Training Course.  

“I loved the course…I learned so much,” she says. “If I had money to dispose of, I’d take the class again because it was so fun and interesting!”

Albright plans to volunteer her new skills at the Down Syndrome Association of Memphis and the Mid South.

“[People] need to know the endless benefits that they can offer their children through breastmilk,” she says.

Albright also practices her breastfeeding advocacy through breastfeeding groups on Facebook, by creating breastfeeding videos on her YouTube channel and offering breastfeeding encouragement through Instagram.

#FactsNotFear

“What do you think of that Fed Is Best movement?” my dear friend wondered when it became prominent on social media.

“Um, I don’t really like it,” I replied so inarticulately. Since then, I’ve reflected on the movement and continue to struggle to express anything coherent.

Kimberly Seals Allers and me (and George!) at the International Breastfeeding Conference 2017 after presenting on her book ‘The Big Let Down.’
[Find it here: http://www.kimberlysealsallers.com/book/]
Just last week though, the remarkable Kimberly Seals Allers, published My Struggle To Find My Voice & Raising A Collective One to Protect Mothers to introduce the launch of the #FactsNotFear campaign which advocates for FACTS, not fear-mongering. Seals Allers and 1,000 Days shared a new blog Facts Not Fear: Protecting the One Place Where Fear Does Not Belong and developed suggested social media posts and graphics for both Facebook and Twitter so that we can easily support the cause.

We are publishing Seals Allers’ guest post here on Our Milky Way in support of the #FactsNotFear campaign.

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We live in a world of fear. From the recent terrorist attacks in England to last year’s Orlando nightclub massacre. We have seen how the fear of outsiders has sparked powerful political movements around the world. As a frequent business traveler I sense my own anxiety as I sit on planes and trains, and as a mother I know the feeling that sweeps over me whenever I receive an incoming phone call from my children’s school.

Yes, we live in times of fear and anxiety—much of which is beyond our control.

But there is one place where fear should not exist. There is one area, where, as women and mothers, that we should insist that fear not enter—that is in the precious act of feeding our babies. From the time they are first placed in our arms, we are anxious that we will do our best. Yes, we are nervous that we will make mistakes. But we should not be made to dread our ability to mother—particularly when it comes to feeding our infants—one of our very first tasks.

That’s why a recent spate of fear-based marketing, particularly from the Fed Is Best Foundation, stoking fears that exclusive breastfeeding kills babies is both erroneous and irresponsible. But it is also the type of insidious marketing that preys on a mother’s existing insecurities that should make all women concerned. If the only way Fed Is Best can make its point is by sensationalizing infant deaths and undermining our confidence in our bodies—then maybe their point needs to be carefully considered.

Or, as women, we insist that they make it with valid facts and sans the fear mongering.

Let’s face it, women are sold fear and anxiety as a marketing tool every day. In fact, the strategy, officially known in business circles as FUD—fear, uncertainty and doubt—was designed by an IBM executive decades ago to persuade buyers to feel “safe” with IBM products rather than risk a crash, virus or server disruption. By the early 90’s it was generalized to refer to any kind of misinformation used as a competitive weapon.

Today, weaponizing fear takes many forms. We fear our faces aren’t pretty enough, so we buy cosmetics. We worry that our body isn’t the right “type” so we are sold diet plans and surgical procedures. We are told our hair isn’t shiny, bouncy or thick enough so we are sold multitudinous hair products. And then we are told to fear that our bodies may not properly do what they are biologically made to do, and we are sold infant formula.

The truth is, our bodies were uniquely made to feed the infants we create. Decades of scientific research proves that formula is nutritionally inferior to breastmilk. Admittedly, societal pressures, structural barriers such as a lack of paid maternity leave, and physicians who receive little to no training in lactation science in medical school, make it very difficult for some women to fulfill their biological norm. Many women who want to breastfeed find undereducated physicians and nurses and limited post-natal support—particularly in the early days after discharge. We have much to overcome.

To be clear, infant formula is necessary. When a mother’s own breastmilk or human donor milk is not available, then infant formula is an important third option that can, at times, save lives. However, women should come to that decision fully informed, not because of marketing efforts designed to incite distrust in their own bodies or threatened with the fear of the death of their infant.

It’s no secret that, especially in the Western world, women already fear they will have insufficient milk. For some, this fear can become a self-fulfilling prophecy because fear and anxiety can literally limit lactation by stifling the letdown reflux that stimulates the milk glands. Feeding into this insecurity by promoting early formula supplementation “just in case” has been a go-to move by the formula industry for years.

As far back as the 1940s, the manufacturers of Borden KLIM evaporated milk ran a radio jingle in the Congo that stoked mother’s fears over insufficient milk. The song went:

The Child is going to die

Because the mother’s milk has given out

Mama o Mama the child cries

If you want your child to get well

Give it KLIM milk

So when Fed Is Best frequently promotes eerily similar headlines claiming, “One bottle would have saved my baby”—it seems to make early supplementation innocuous, while deploying a similar tactic used to spur sales of infant formula. The insidious message is that your breast cannot be trusted but a bottle can—this type of marketing should concern all women.

Instead of fear, we should demand the facts about why physicians and nurses don’t have more education to properly identify lactation dysfunction or failure. We should demand knowledge about other options to increase milk output such as hand expression, which can extract more milk than a pump. If formula must be used, it should be administered as a temporary bridge until a mother’s supply is established, not a breastfeeding killer for mothers who want to nurse. And we should demand standard home visitation immediately after discharge, as is the practice in the UK and other European countries.

Ultimately, women deserve facts not fear. Women have a right to guilt-free, confidence-building information and support. And it’s time that we demand it of everyone—including, and especially, from those claiming to support mothers. We cannot stand by while Fed Is Best insists that fear is best.

Kimberly Seals Allers is an award-winning journalist and nationally recognized infant health advocate. Her fifth book, The Big Letdown—How Medicine, Big Business and Feminism Undermine Breastfeeding was released in January by St. Martin’s Press. Learn more at www.KimberlySealsAllers.com and follow her on Twitter @iamKSealsAllers.

Breast milk for their ‘Nemo’

After three years of IVF treatments, Elizabeth (Elizabeth has asked that we keep her last name private,) MSN, ARNP, PNP-BC, CLC, CPN learned that her baby, her last frozen embryo, would be born with at least a bilateral cleft lip. 

“My husband, the entire pregnancy after we found out about the cleft lip, was hoping it would go away, that the ultrasounds were wrong or it would fix itself,” Elizabeth remembers. “He was in complete denial.”

But after their son was born, Elizabeth overheard her husband compare him to the popular Disney character Nemo; He is our Nemo. Nemo had a gimpy fin and our son has a birth defect, she recalls him saying.  

“For him to have that pride and comparison to Nemo is breathtaking,” she goes on. 

Elizabeth, a pediatric nurse practitioner and doctoral student at the University of Florida, currently teaches undergraduate nursing students at the local children’s hospital.  

Her first job as a registered nurse was in the NICU which strengthened her support for human milk and breastfeeding.

“I saw first-hand the benefits of breast milk for those tiny little babies, not only for the children but for the moms as well,” she says.

It was after the birth of her son that she became especially determined to earn lactation credentials so she could help families achieve their infant feeding goals.

In May, Elizabeth completed The Lactation Counselor Training Course.  

‘Not this month’

Elizabeth says she always thought she would have four children, but several years of IVF treatments proved to be exhausting.

“It was one of the most difficult times of my life,” she says.  

In the beginning, Elizabeth shared her IVF journey with friends and family in search of support. But when treatments failed, it became too draining.  

“I would be curled in the fetal position crying hysterically while my poor husband had to be the one to tell everyone ‘not this month,’” she remembers. “I got tired of everyone feeling sorry for us…”

She acknowledges that people’s remarks like “It’ll just take time,” were intended to be encouraging, but they weren’t. 

“Unless you have lived the agony of wanting to be pregnant and month after month not getting pregnant, you have no idea,” Elizabeth explains.

Co-workers were unaware of the heartache Elizabeth endured those years of trying to conceive, but she remembers crying the entirety of her drive to work, washing her face inside and proceeding to her duties. 

“Going to work I felt like a stranger. A separate person,” she recalls.   

It was on Mother’s Day 2014 when Elizabeth and her husband publicly announced their pregnancy.  

Two years of breast milk

Elizabeth always planned to breastfeed her baby. Breastfeeding was one of the things she looked forward to most as a mother. And after learning of her baby’s bilateral cleft lip, she had only one question: “May I still breastfeed?” 

In preparation to feed her baby with special needs, Elizabeth contacted lactation counselors, met with a cranio-facial surgeon, made spread sheets with pumping times, and talked to everyone she knew in the medical field about cleft disorders. 

Despite avid preparation, Elizabeth wonders if the feeding support she received immediately following the (frank breech, unmedicated, vaginal) birth of her baby could have been better.

“We did not get skin to skin after delivery which still makes me sad,” she says.  A lactation specialist helped Elizabeth to pump her milk, but her baby wasn’t even in the room when the specialist came to visit her. 

Presently, the hospital where Elizabeth birthed is Baby-Friendly. Looking back, she wishes this had been the case during her stay.

“I know it would have truly made a difference,” she says.

While Elizabeth eventually learned that her son’s latch and transfer would not allow him to breastfeed directly exclusively, lactation specialists from the hospital’s Mother Baby Tea and their occupational therapist, helped her use the supplemental nursing system (SNS) and Haberman feeder. Elizabeth provided breast milk for her son for two years!

“There is absolutely nothing better in this world than feeding the son you love and smelling him and holding him close,” she reminisces.

Breastfeeding her baby also gave her the gift of feeling connected to other women. While nursing her baby at a doctor’s office, she looked up to the smile of another woman.

“It was one of those knowing smiles only women who breastfeed can share,” she says. 

Ongoing challenges

When he isn’t busy at weekly occupational and speech therapies for feeding difficulties and a speech delay, Elizabeth’s son, now two years old, loves to swim and read books about Nemo.

There’s a lot to anticipate throughout Elizabeth’s family’s journey; A child with cleft disorders will undergo an average of nine surgeries before she/he is 21 years old, she reports. She asks that we all remain sensitive to the ongoing challenges cleft disorders present, especially after watching videos by adolescents affected by cleft disorders.

“I cried and cried hearing about all the teasing these young people endured,” she says.

Reflecting on her own journey, Elizabeth says: “Motherhood, breast feeding, cleft disorders are all hard. If I can help or make a difference for just one mom and baby, that is all I can ask.”

Highlights from the 10th annual MAINN conference: Nutrition & Nurture in Infancy and Childhood: Bio-Cultural Perspectives

A small group of Healthy Children Project faculty were honored to attend and present at the University of Central Lancashire, Maternal and Infant Nutrition and Nurture Unit (MAINN) conference in lovely Grange-over-Sands, England last week. (For highlights of last year’s MAINN conference, visit this page). The MAINN conference has been held not only in the UK, Australia, and Sweden, but next year will be held in conjunction with Healthy Children’s International Conference in Deerfield Beach, Fla. from January 9 to 12, 2018.

This conference brings together researchers and experts in fields that support the establishment of the maternal-infant bond and related issues in nutrition and nurture. The remoteness of this seaside town in the Southern English Lake District created a container for further discussion and networking during and between sessions, as well as before and after the conference day. The schedule of the 3-day conference was prodigious, encompassing six plenaries, 72 breakout sessions, four workshops, and a poster session featuring the work of 17 research teams.

The HCP team offered to share insights with me from the conference, but struggled to do justice to all the learning insights and meaningful intellectual interactions that occurred. Therefore, they decided to blog about what they learned from one particular presentation.

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One of the amazing presentations we attended was Renee Flacking’s report on the research that she had done with Fiona Dykes of the UK regarding the use of nipple shields in the neonatal intensive care unit (NICU.) We can’t think of any superlatives beyond “Wow!” to describe the level of excellence, passion, and insight contained in this presentation. In order to collect the data for the ethnographic study, Flacking spent more than 600 hours “living” in four NICUs in Sweden and England. Observations, field notes, and interviews were searched for themes related to parents’ and staff’s perceptions and experiences of using a nipple shield in transitioning a preterm infant to feeding at the breast.

As background, Flacking acknowledged the debate over nipple shield use and presented two influential nipple shield studies: one small study that indicated that transfer of breast milk was enhanced when mothers of premies used a nipple shield to breastfeed (Meier et al., 2000), and a large study that found that premies who were exposed to nipple shields were significantly less likely to continue breastfeeding and to breastfeed exclusively (Kronborg, Foverskov, Nilsson, & Maastrup, 2016.)

Dr. Fiona Dykes, conference coordinator

Flacking & Dykes found that parents and staff thought of nipple shields as a transitional tool to progress to feeding at the breast, but mothers had some mixed and negative feelings as well. Mothers felt that the need to use a shield indicated that their breasts weren’t good enough and expressed that the nipple shield became a barrier between them and their baby. The researchers found two organizing themes: 1) the need for the baby to learn quicker, in order to get to full breastfeeding faster, and thus the nipple shield could be a short-term bridge to this goal, and 2) the interference of the nipple shield in the relational aspect of breastfeeding; that the shield impacts the development of the relationship between the mother and the baby. Holding these two organizing themes “in balance may be the key to appropriate use of the nipple shield,” Flacking stated.

The mother and baby’s needs must be taken into account in determining strategies to facilitate breastfeeding in a person-centered and ongoing way.

As we thought about and discussed Flacking and Dykes work among ourselves and with others, we couldn’t help but agree that nipple shields are often presented as a quick means to an end (as we have heard mothers complain about “helpers” latching the baby mechanistically like screwing in a light bulb), without taking into consideration the potential negative ramifications of the meaning of the shield to the family. We would never want any mother to think that she was not enough for her baby, that her breast was somehow suspect or inadequate, or that a piece of silicon could come between her and her baby. Particularly when we are working with the potential of feelings of inadequacy or guilt coming from the incomplete pregnancy, we must assume that mothers need help decoding the meaning.

HCP Faculty and Colleagues

We also pondered the resonance between Flacking and Dykes’ findings and those of Kronborg and colleagues, who cited that while nipple shields may be help mothers in the early period, but are “not necessarily a supportive solution to the inexperienced mother who needs extra support in the early process of learning to breastfeed.”

Growing Green Families

On World Environment Day last week, The World Alliance for Breastfeeding Action (WABA) and Pesticide Action Network Asia and the Pacific (PAN AP) reminded us that The Earth is Our Mother, and caring for her is essential to our health.

It’s easy to feel defeated by the burden of environmental degradation we have created and carry though; To be aware is to be afraid.

“…How can we become aware, take action, and not let ourselves become so vigilant, so aware, so motivated, and so afraid that we forget to enjoy the beauty of the Earth around us, the sounds of our children and grandchildren laughing, the calm music softly playing, and living our best life?” Master Herbalist and Certified Aromatherapist Donna Walls, RN, BSN, IBCLC, ICCE, ANLC wonders.

Released earlier this year by Praeclarus Press, Walls’ Growing Green Families: A Guide for Natural Families and Healthy Homes offers families a concise, practical guide complete with simple recipes on how to reduce their exposure to environmental toxins. Walls’ casual tone is easy to digest and makes for a speedy read.

She presents a collection of natural alternatives for personal care and housecleaning products, lawn and garden care, recycling strategies and a cleaner way to feed our families.

The recipes she shares come from years of experience as a lover of nature, all used by herself, friends and family or in classes she teaches.

When asked for her favorite recipe… “That’s like picking your favorite child– impossible, but the ones I use most are general cleaning and many of the aromatherapy recipes like the hand sanitizer,” she says.

Many of the recipes Walls suggests are concocted with easily accessible and relatively inexpensive ingredients like vinegar, plain yogurt, witch hazel, olive oil, baking soda, castile soap, to name a few. Still, some people have concerns about the perceived price of “going green,” like the cost of essential oils and organic food.  

“My usual response is that we all prioritize our budget, so it really is a matter of making healthy, clean living a priority for lifestyle and budget,” Walls begins.

“My snarky response: cancer co-pays are also very pricey,” she alludes to reports by the Environmental Working Group and the Environmental Protection Agency which estimate that many of the products we use are human carcinogens.

Walls’ granddaughter passes on the tradition of green cleaning.

Homemade product preparation has been criticized for being too time-consuming, too.

“Much as with money, we all have priorities,” Walls says. “We have time to do the things we value.”

She suggests combining activities, like preparing products while watching TV or prepping cleaning supplies while cooking. After all, “cleaning with a conscience” starts with vinegar, lemon juice and baking soda, all kitchen cupboard basics!

Of bigger concern is access to organic, clean food in food deserts. It is an opportunity for community and personal activism, Walls says.

She suggests supporting local community gardens, volunteering at local food pantries to help obtain healthy food, and establishing and contributing healthy options to street food cupboards.

Growing Green Families touches on concerns about toxins during pregnancy and nods to breastfeeding as “the best first food.” With fingers crossed, Walls says she hopes to publish her next book with a focus on childbearing years.