On Becoming Transliterate: An Interview with Diana West, BA, IBCLC

By July Guest Blogger, Nikki Lee RN, BSN, MS, IBCLC, CCE, CIMI, ANLC, CKC

From dianawest.com
Diana West BA, IBCLC       From dianawest.com

Diana West BA, IBCLC, LLL, is a co-author of many important works, (the 8th edition ofthe Womanly Art of Breastfeeding, Sweet Sleep: Nighttime and Naptime Strategies for the Breastfeeding Family,  Breastfeeding after Breast and Nipple Procedures, The Clinician’s  Breastfeeding Triage Tool, and The Breastfeeding Mother’s Guide to Making More Milk) , as well as the sole author of Defining your Own Success: Breastfeeding after Breast Reduction Surgery and editor of her father’s autobiography, In the Line of Duty.   In addition to her websites, she is well known as an educated, lively, and passionate public speaker. Our Milky Way blog is grateful for the chance to interview Diana about her research article, “Transmasculine individuals’ experiences with lactation, chestfeeding, and gender identity: a qualitative study,” co-authored with Trevor MacDonald, Joy Noel-Weiss, Michelle Walks, MaryLynne Biener, Alanna Kibbe and Elizabeth Myler.

The universe works in wonderful and mysterious ways. Several years ago, Diana received an email from a would-be author asking her to read a book that he had written. There was something special about this letter that captured her attention. In it, Trevor MacDonald, a trans man wrote of reading her book Defining Your Own Success: Breastfeeding After Breast Reduction Surgery, and then of being inspired to chestfeed his own child.

As the right of all people to their own identity is one of her core values, Diana entered into a relationship with Mr. MacDonald, first as a mentor guiding him towards publication, and then as a friend, sharing a room with him at an ILCA conference, and then as a collaborator, working together.

He was appreciative of and patient with her respectful approach; he taught about this new world, where an untold number of people struggle without help, staying underground as they fear the judgments of the helping professions.

They thought of publishing a case study but changed their minds to do a research study instead. While they initially envisioned a quantitative study, after consulting with others, including Canadian Professor Joy Noel-Weiss, they decided to do a qualitative study.  Dr. Noel-Weiss helped them to see that the data in a qualitative study would be richer, giving insight into the motivations behind lived experience; this would be far more valuable than evaluating numbers.

After developing research questions and obtaining clearance from an ethics committee, the merry band applied for a modest CHID (the Canadian version of the US’s National Institutes of Health) grant.  In an amazing affirmation of the value of this research, they received $100,000, far more than they had requested, because the agency was so impressed with the topic!

The 3 goals of their study were: to understand the lived experience of the transgender men who chose to birth and to chestfeed, to understand the barriers they encounter, and to provide guidance to healthcare providers.

Many breastfeeding helpers came of age and into their avocations in the 1970s, when women were fighting for autonomy and rights to freedom in birth and breastfeeding. Today, some feel that trans men are encroaching on women and their feminist perspectives. This is why trans women were banned from a women’s festival in Michigan. Instead of saying, “These are more women who have been denied dignity” they were seen as men who were encroaching on a woman’s needs for equality of choice. However, gender identity is not binary, i.e., only male or female.

A cisgender person, one who identifies as the gender manifested by their genitalia may not be absolutely and always female or male.  Gender identity is fluid. We may feel more male on some days, more female on others, and there are days when we feel neuter. There are mutational variations of hormones that create variations on gender. Babies are born with ambiguous genitalia. There are cultures where people can be recognized as 2-spirited. Gender, identity, and sexual preference are complex traits, there is a wide range of variation, and consequently, people don’t all fit into a neat “either/or” category.

Thirty-three years ago, I met a great fiddler named Gary. Gary was the most crass and obnoxious man that I ever met. It was impossible to have a conversation with him without his making some gross joke or sexually slanted comment. I didn’t like to be with him, because he was such a cad. He lived in the South; I lived in the North and didn’t have contact with him very often.

Fast-forward 25 years, when I run into Gary at a fiddler’s convention. Only now Gary has breasts, is wearing a dress, earrings and make-up and wants to be known as Marie. We had an amazingly open discussion, where I got to ask all the questions I wanted to ask and she answered them all. She told me that all the deeply difficult work, all the family disruption (before transitioning, she had married and had 2 children), and all the medical and surgical interventions were worth it, as now she felt complete and comfortable in her own skin for the first time in her life.  All was well except for one thing, family and friends continued to use the wrong pronoun; myself included. I got annoyed with her for being annoyed with me when I kept using male pronouns; I said to her, “Gary, I’ve known you for 33 years as a male and it is hard for me to switch gears quickly enough for you.”

After hearing this story, Diana gently suggested,

 “Oh yes you can, and here is why. For a trans person to come out to the world as someone who is a different sex than the world has known them before, is one of the most difficult situations imaginable. It is difficult to be brave enough to be one’s true self out in the world. Acceptance is what is craved, in order to have dignity. When we who are cisgender do not recognize that change, we are denying that person their dignity. We can make the effort to honor the pronoun they choose.  Everybody has the right to the pronoun of their choice. It is simply a matter of respectfully asking them what pronoun they prefer.” (This means adding new terms, understanding, and words to our vocabulary.)

Diana goes on to say, “We don’t know people’s paths, and we don’t know their hurts. When we accept people choosing the path that meets their needs, we recognize their right to be who they are. “

She paraphrases Mr. MacDonald in saying that many people find the concept of being transgender disturbing because they picture themselves having to act and dress differently than their true selves. But really, it is the trans folks that have had to act differently to who they really are until they transition. Putting it another way, was there a day that you consciously chose to be cisgender? Or, do your feelings about your gender identity flow from a place inside you, where the truth of who you are has always lived?

Society is presently a challenge, as there is anger about trans gender.  Some people believe that sexuality is a choice and manifest their fear in attacks that fill our feeds and screens. The rudeness and brutality of the Internet and the rhetoric of today’s political debates is painful to those struggling for recognition.  It behooves us all to post and tweet with courtesy and respect.

Science and technology have made possibilities real that were hitherto unimaginable. Think of the suffering that has gone on for millennia, where differently gendered folk could only dream of the pharmacy and the surgery that would enable them to have their physical bodies match their inside spirits. Today, these dreams can come true; now, everyone in society needs new skills and new understanding to catch up to the new reality.

Another barrier is the public attitude about children who are being parented by trans men.  Diana responds,

Children raised with love and respect and healthy growing environments, have the best chance to be wonderful adults. We don’t have to be perfect parents; the only ideal for a parent is deeply loving a child and taking care of them.  There is NOTHING about being transgender that precludes them from being a good parent. In fact, they may have more understanding to teach about the importance of treating everyone with dignity.”

Most trans people are not activists as they are too busy living their lives. The trans experience is really about self-actualization, a concept younger folks may not yet appreciate.

So far, what is most helpful is social support from family and friends. (This is true for breastfeeding too!) The people who donated a lot of the milk that Mr MacDonald used to chestfeed were Mennonites and Mormons. Although they knew who he was, their priority was on feeding the child human milk, and they didn’t judge him nor withheld their gift.

As healthcare professionals, we need to become transliterate, so that we can be helpful and respectful to anyone that we care for. This means educating ourselves so that our clients don’t have to explain everything over and over again with each one of us. The new research article has great information about how healthcare professionals can help transgender clients more effectively.  Diana also has a FAQ on her website to aid the transgender person in finding the help they need for birth and breastfeeding, and for healthcare professionals to educate themselves.

Ask about preferred pronouns and “what would you like your child to call you?” There is no need to apologize for what we don’t know; “I want to be helpful, how can I help?” is a lovely way to start a discussion.  People make mistakes; those who are transgender understand this. Our responsibility is not to be stuck on our mistakes, and to make the transition to helping and not to impose our own struggles.  We also want to avoid overcompensating to prove how cool and current we are.

If transgender issues aren’t comfortable for you, remember that as healthcare professionals, we are ethically bound to take care of people that we may not like. We have an obligation to provide best care; this requires only an intention of respect. We need to treat people in a humane way, as we should be treating ourselves.

Grammar is another stumbling block, as language locks old societal attitudes into our unconscious, where they are negative influence on our interactions with others.  Diana says, “ ‘They’ has been a plural noun; we have to let go of old grammar rules and use ‘they’ as a singular noun.”  (Facebook is doing this.) This will get rid of the gender binary view, and bring us forward into the 21st century. Language is a dynamic, changing thing; language change fuels our intention and is manifested in our actions.

A mistake that I made in this interview was to talk about the “transgendered” This noun is similar to the term “colored”, it is a subtle way of expressing the terrible attitudes towards “those people who are different to and inferior than us.”  Diana encourages the use of the word “transgender”.

Diana reminds us that of the need for acceptance, dialogue and welcoming all points of view; she is collaborating with transgender speakers to introduce her talks on that topic. Her goal is to be a cisgender Ally; the capital ‘A’ is intentional and reflects the importance of a new social advocacy role in supporting human rights. Her dream is for all people to become self-actualized and lead the best and healthiest lives possible.

We applaud Diana for breaching this barrier, and educating us about human rights. We can use this information in our own communities, and together, build an inclusive and respectful world.

Introducing July’s guest blogger: Nikki Lee

mail1Nikki Lee, joining us as an Our Milky Way guest blogger during my maternity leave, has an excellent line up for you to indulge in this month.

The first time I met Nikki was at my first International Breastfeeding Conference. She warmly approached me and asked, “So what do you do?”

“I’m just a stay-at-home mom,” I replied.

“What do you mean just a stay-at-home mom?” she asked.  

During that simple exchange was the first time I felt validated as just a mom, and that validation never left my side. During that simple exchange, Nikki made me feel important which has had a huge impact on my confidence as a mother.

I have no doubt Nikki’s contribution to the blog will make an impact on your work.

In one post, she comments on a language change in the field.

“Folks don’t talk about breastfeeding any more,” she says. “They talk about latching the baby on. This makes me sad; it is like talking about the penetration instead of love making.”

In another post, she interviews Diana West about her co-authorship of the article Transmasculine individuals’ experiences with lactation, chestfeeding, and gender identity: a qualitative study.

“The blog is about … what breastfeeding helpers need to do to best serve all clients,” Nikki reports.

She tells me another is about a model of practice exemplified in a local organization where doulas and CLCs saw about 450 mothers and about 20 to 25 of those needed referral to an IBCLC.
Stay tuned! In the meantime, you can visit Nikki’s website here.

Summer blog plans

The day my family welcomes another little human into our tribe is swiftly approaching! As I anticipate the intensity of another birth and the following weeks filled with squishy, sweaty, summer baby newborn snuggles, I’d like to update all of our marvelous Our Milky Way readers on the summer blog plans.

As I welcome a three month maternity leave navigating the milky waters of mothering three little ones, the radiant Donna Walls RN, BSN, ANLC, ICCE, IBCLC and Nikki Lee RN, BSN, MS, Mother of 2, IBCLC,RLC, CCE, CIMI, CST (cert.appl.), ANLC, CKC, and several of the talented members at Healthy Children Project’s Center for Breastfeeding will take the helm.

Nikki will take over during the month of July, dazzling you with her brilliance. In August (better known as National Breastfeeding Month!) the one and only Cindy Turner-Maffei, MA, ALC, IBCLC will coordinate World Breastfeeding Week themed posts by Center for Breastfeeding crew members. And just before I return, Donna will wow you during the month of September.

I’m so thankful to have such a great team temporarily take over Our Milky Way. I know you’ll be impressed and learn a lot. While I am very much looking forward to the opportunity to spend the summer focusing solely on my littles, I know I’ll be anxious to return in October. Wishing you all a safe and peaceful summer!

Best for Babes’ Miracle Milk® Stroll increases awareness of lifesaving power of human milk

Dover, Delaware Miracle Milk Stroll Credit: Katie Phillips Photography [https://www.facebook.com/KatieTPhillipsPhotography/]
Dover, Delaware Miracle Milk Stroll
Credit: Katie Phillips Photography [https://www.facebook.com/KatieTPhillipsPhotography/]
Best for Babes is the only national consumer-driven nonprofit for the human milk cause.  Their largest annual event, Miracle Milk® Stroll (MMS), is in its third year. The MMS happens each May in cities across the U.S. and Canada. The purpose of the event is to increase access to and awareness of the lifesaving power of human milk, especially for our most fragile infants in the NICU. Best for Babes shares proceeds with nonprofit partners to support their work in getting more human milk to more of our babies.

This year, over 2,500 people attended and donated raising over $31,000* for the human milk cause!

Rock Star Local Coordinator Amanda Cullen has been hosting the Stroll in Dover, Del. since its infancy. This year, just under 90 people attended.

Dover, Delaware Miracle Milk Stroll Credit: Katie Phillips Photography
Dover, Delaware Miracle Milk Stroll
Credit: Katie Phillips Photography

Cullen shares the highlight of Dover’s Stroll being the community rallying around a life-saving cause.  

“I loved ending the Stroll and having people who saw us walk come up to ask questions about milk donation and to connect with others saying, I breastfed my baby, too…The feedback really showed the impact of awareness!” she exclaims.

Dover, Delaware Miracle Milk Stroll Credit: Katie Phillips Photography
Dover, Delaware Miracle Milk Stroll
Credit: Katie Phillips Photography

Cullen also shares: “A mom was photographed breastfeeding her baby in the background of [a] picture– something that she was unaware of at the time… She was so amazed about  how unexposed she was and it has completely increased her comfort level for breastfeeding in public. One small step in reminding us that this is a normal behavior.”

Another mother donated 274 ounces of her milk to the Mother’s Milk Bank!

Davenport, Iowa Miracle Milk Stroll
Davenport, Iowa Miracle Milk Stroll

Davenport, Iowa’s Stroll, coordinated by Rock Star Local Coordinator Aubrey Schlue, also welcomed about 90 participants this year.  

Schlue reports that between attendees and sponsors, their event raised over $1,000.

“The highlight of our Stroll was having Jean Drulis, director and co-founder of the Mother’s Milk Bank of Iowa, come and speak about what they do, the importance of human milk donations, and how to donate,” Schlue says.

The Davenport Stroll also featured a local mother who shared her experience using donated milk when one of her children–now a healthy 11-year-old–was born prematurely.

fe597a64-8449-48dc-9077-c3fc00fe00c6“The hospital wouldn’t allow her sister to donate breastmilk to their child, and she had to work hard to get donated milk from the Iowa Milk Bank,” Schlue reiterates. “It was a huge ordeal because they had never used donated milk at the hospital. Local mothers here in our area owe a lot to this mother, because she paved the way for future children to have access to this lifesaving milk.”

Schlue was impressed that a local news station covered their Stroll this year, too.

Davenport, Iowa Miracle Milk Stroll
Davenport, Iowa Miracle Milk Stroll

“I think that a lot of the resistance to breastfeeding and milk sharing or donating is based on misinformation, so any time we can get those statistics and facts out there in the community is a win in my book,” she comments.

Cullen and Schlue both admit challenges to hosting a Stroll.

Hosting the Miracle Milk Stroll is a pretty hefty undertaking, but having a co-coordinator or two really helps,” Schlue says.

She also says that the event doesn’t have to be extravagant.

Davenport, Iowa Miracle Milk Stroll
Davenport, Iowa Miracle Milk Stroll

“Not every Stroll needs a tent with tables and decorations,” she says. “The heart of the Stroll rests in raising awareness and funds to help premature and compromised infants…it’s important to encourage those who don’t have the time or funds to pull off such a huge event to still host a Stroll in their area.”

Schlue reflects on the first Stroll she hosted by herself. About 20 people showed up.

“It was still a valuable and worthy use of my time,” she says.

Cullen says that each year, it has gotten easier hosting the Stroll.

Davenport, Iowa Miracle Milk Stroll
Davenport, Iowa Miracle Milk Stroll

It can be overwhelming,” she comments. “We are communicating mostly via Facebook with almost one hundred other locations and Best for Babes Stroll Coordinators all over the country and Canada.  So, my advice would be to relax, remember why you are doing this, and ask questions!”

Despite these challenges, Cullen’s and Schlue’s passion to help moms and babies is unshakeable.

Even before having children of her own, Cullen says human milk was important to her.

Dover, Delaware Miracle Milk Stroll Credit: Katie Phillips Photography
Dover, Delaware Miracle Milk Stroll
Credit: Katie Phillips Photography

“I remember wanting to support friends that were having babies,” she says.

When her daughter was born with a minor heart defect that corrected itself around four months, her cardiologist attributed her fast recovery to exclusive breastfeeding. 

“My experience with her– having to take a new baby in and out of specialist offices during the harsh winter, lessening her risks of getting sick, lowering her symptoms when getting sick– I was able to see first-hand how beneficial breastmilk is,” Cullen says.

It was during her experience coordinating the  Miracle Milk® Stroll in its inaugural year that Cullen learned the most about Necrotizing enterocolitis (NEC), a disease that affects the wall of the intestine.

“… After learning that receiving donor milk can be life saving, my passion increased,” she reports.

Davenport, Iowa Miracle Milk Stroll
Davenport, Iowa Miracle Milk Stroll

Schlue says the human milk cause is important to her because “it is a perfect food for babies and children, whether it comes straight from the tap or is expressed and/or donated.”

She goes on, “The statistics on NEC are staggering and heartbreaking… It can cost so much money and multiple surgeries to repair the damage and yet, simply by using human milk instead of formula to feed these children, we can reduce the risk of all that pain and suffering by 79 percent. That is huge.”

Find more great Miracle Milk® Stroll stories here.

*Edited from original post to reflect final audited numbers.

Parent partners have profound impact on breastfeeding learning collaborative

Collaboration has always been a vital part of ensuring healthy maternal child health outcomes, whether it be among professionals or within the community. NICHQ’s Texas Ten Step Star Achiever Breastfeeding Learning Collaborative, supported by the Texas Supplemental Nutrition Program for Women, Infants and Children (WIC) program and the Texas Department of State Health Services (DSHS), is the perfect example of how to get parents involved in collaborative efforts that improve infant feeding support.

The learning collaborative includes multidisciplinary teams from Texas-based hospitals which are broken into three geographically-based cohorts.

a5b7f828-8a6b-4a2e-991d-a3af6ffe7714“The parent partner role is a member on the team that provides input first and foremost on their own birth experience…. This builds a connection and a focus in the work hospital staff are doing related to breastfeeding,” Texas Ten Step Coordinator Veronica Hendrix, LVN, IBCLC, RLC says.

Within each team, the parent role differs depending on their availability and personal skills. For instance, some mothers provide feedback on hospital-developed materials to ensure infant feeding messages are consistent and appropriately reach moms.

Parent partners may get involved with hospital marketing departments to help develop positive breastfeeding messages to display on social media outlets. Other moms have started in-person and online support groups depending on their comfort level, Hendrix explains.

Hendrix recalls one mother who contributed to her team through an in-person breastfeeding support group. At first the group’s attendance was low, so the hospital conducted a survey that revealed that mothers did not attend because they didn’t know anybody; they were apprehensive to open up to a group of strangers.

In response to low attendance, the parent partner went through the hospital’s training to become a volunteer. This allowed her to interact personally with the postpartum mothers. She encouraged them to attend her support group face-to-face, and it made a difference.

“That is the epitome of what we wanted a parent partner to do,” Hendrix comments. “It’s different when a nurse provides a mother with information on a support group than when a mom personally invites you to go to a support group.”

Hendrix says she’s proud that this team in particular utilized the mom in “a unique way that identified and filled a need.”

Overcoming barriers to parent participation

Of course, as with all collaborative efforts, the project has faced challenges specifically with engaging parent partners.

Finding the right person for the job is an initial challenge. Even when the right person comes along, availability can cause problems. What’s more, parent involvement can seem overwhelming, especially when moms are joining a mostly medical team where even terminology might be foreign to them.

Due to the sheer size of Texas, travel has proven challenging at times too. In these cases, Hendrix says teams must get creative about how to fund parent travel or keep them engaged when team meetings are missed. Because hospital teams are often inundated with work, it can be easy to meet when there’s a quiet moment without taking the time to invite the parent partners.

“It’s important not to forget that these are important partners that add value to the work staff are doing,” says Hendrix.

Also, because mothers are non-traditional team members, sometimes hospitals are hesitant to share their work with parent partners. HIPAA regulations protecting patient privacy have made the interaction especially tricky.

Finally, it can be challenging for hospitals to understand fully how to utilize and integrate the parent partner’s role.

“It’s important to look at the needs you have on the team and then think creatively about how the parent can fill that role,” Hendrix explains.

DSHS and NICHQ strive to provide hospitals with continued opportunities to learn, and give them ideas on how to best utilize mothers’ services.  

“It’s a matter of bridging those gaps where we see them,” Hendrix says.

Still, these challenges have not discouraged parents from getting involved.

Sharing their story

“What entices parents to participate is just being able to tell their story whether it was good or bad,” says Hendrix.

This NICHQ blog post highlights parent partner Andrea Thompson who shares her advice on getting involved with the collaborative: “My advice to parents is to get involved in any way that you can. Don’t be shy just because you don’t understand the hospital jargon or because many of the things that might be discussed in meetings don’t necessarily apply to you. Bring that outside voice. Remind the members of the team that do work at the hospital what you as a customer or patient, saw, got, want or need. They need that. Be an advocate for that different perspective. Hospitals can’t change if they don’t know where they are providing less than adequate support or care. You have a lot of power as a mother representative—don’t be scared to use it!”

Parent partner Ivette Torres got involved with the collaborative because “postpartum breastfeeding support at the bedside is imperative to success,” as she explains here.

Mercédez Cahue’s involvement as a parent partner allows her to exercise her passion for breastfeeding.

“I love being able to assist someone interested in breastfeeding and offer advice and help,” she writes on NICHQ’s blog. (You can read other patient and family engagement stories here.)

225x300_StoryPhoto_Jennifer-UstianovParent partners have a profound impact on the success of the collaborative. NICHQ Senior Director Jennifer Ustianov MS, BSN, RN, IBCLC reports that aggregate results from the 21 Cohort B hospitals have been impressive.

“In just 15 months, the overall  breastfeeding rate went from a median of 82 percent to 84 percent; the percentage of mothers receiving referrals to the community support they need at discharge to continue breastfeeding at home went from 62 percent to 83 percent; and the percentage of mothers that were able to raise their skin-to-skin rates after a vaginal birth went from 36 percent to 67 percent,” she reveals.  
For more information about this program, please visit http://breastfeeding.nichq.org/solutions/texas-breastfeeding-collaborative