I’ve been following this conversation started by the Grammar Girl:
“I was a guest on a podcast where kids asked two people questions to decide who was the fake and who was the real expert.
The host said that early on, the kids thought the fake was the expert every time because the actors answered every question confidently, and the experts would hedge or even sometimes say, ‘I don’t know.’
They eventually told the fakes to be less confident so the kids would have a chance of picking the expert sometimes.”
The Grammar Girl’s post was making a point specifically about ChatGPT, but the sentiment can be applied more generally, and in our case to the field of lactation and other perinatal care providers.
Some of my favorite comments on the Grammar Girl’s post include:
Never trust an expert who isn’t willing to admit that they don’t know.
Experts know that there are sometimes variables or gray areas, thus they don’t answer in terms of absolutes.
That makes me think of how an intelligent person (possibly an expert in something) is still curious and open minded enough to not always be sure of everything.
Those who are experts, look before they leap, stop before they comment, ask for help and do their research. Saying ‘I do not know’ is a strength.
It reminds me of the quote: ‘The enemy of knowledge is not ignorance, it is the illusion of knowledge.’
Individuals on the perinatal care team can get stuck in a rut where humility is absent, and this can become dangerous for their patients.
“Perinatal health professionals work tirelessly to provide the best care they can. Unfortunately, sometimes we get stuck performing “strong but wrong” routines. For example, we have centuries of evidence to tell us that physiologic birth practices are key to having the best outcomes. Yet, too often we do not practice what I like to call physiologic humility. Humility that the physiology of a woman’s body before, during, and after giving birth is complex and typically works well on its own. Thus, we should proceed with physiologic humility because there are so many limitations in our knowledge of the complex physiologic processes related to birth …
As perinatal health professionals it is our responsibility to do everything possible to ensure that women in our care get to experience Mother’s Day. Especially this month, may we all continue to keep that in mind and as a top priority.”
In all fields of care, cultural humility must also be maintained. As defined by the National Association of County & City Health Officials (NACCHO), cultural humility (CH) is “a lifelong process of self-reflection, used to better understand the multi-dimensional identities of clients in order to establish and maintain respectful, healthy, and productive relationships.” NACCHO’s Shifting the Care Paradigm Fact Sheet describes how lactation care providers can partner with families and their community to understand individual patients’ cultural background, experience and personal challenges, and specific goals.
In the U.S., perinatal care is often siloed; however, this trend seems to be evolving as care becomes more collaborative. Collaboration requires all care providers to exercise a level of humility, offering their expertise while respecting and hearing out other members of the care team. Most importantly though, care team members must work together to respect their patient’s wishes and facilitate informed decision making.
My oldest daughter was perusing through her baby book the other night and discovered an exhaustive list of the gifts we’d received at my baby showers. Without dismissing how incredibly generous our guests were, looking back, I’d deem 90 percent of the items we received (many of which I’d registered for) useless.
Then I remembered a dear friend of mine who participated in and later facilitated a wonderful, meaningful baby sprinkle activity.
The invitation’s poem read:
Bring two matching beads
We’ll put them on a string
For Super Mom _____ to the hospital to bring (tweak for other birthing spaces)
Armed with our bead string, she’ll have our thoughts near
When she brings forth a child…. So dear!
One of the beads was strung onto a necklace for the mother and the other beads were strung onto bracelets for the guests to wear until the baby was born as a way to send prayers or manifest positivity during pregnancy, birth and beyond.
How I wish I had an artifact such as this to cherish in exchange for the heaps of plastic I’d acquired at my shower!
Now, as a baby shower guest, as tempting as darling baby outfits and beautifully printed blankets are, I generally opt for gifting some of my favorite breastfeeding books like Gill Rapley’s Baby-Led series. Knowledge is an incredible gift and it will never make its way to a landfill.
Pondering more about meaningful gifts for expecting parents and their babies, I got to thinking about how the baby shower is a microcosm of parenting culture. The avalanche of baby bottles, pacifiers, swaddling blankets and other gadgets and technology instigate detachment from baby rather than bonding. So, this week, we’ve compiled suggestions on how to make a baby shower breastfeeding-friendly along with ways to use this celebration as a source of education for parents and their guests.
Provide seed paper or other stationary for guests to record birth and breastfeeding affirmations to be gifted to parents.
This feeding cues game can be adapted for baby shower guests. Not only is it important for new parents to recognize feeding cues, other caregivers need to understand when it’s ideal to feed the baby as well. If those attending the shower understand feeding cues, they’ll know just when to hand back the baby to be fed!
Help for parents sign up
Use the baby shower gathering to post a meal train, house chores, or childcare for older siblings sign up sheet. You could also use this opportunity to gather other helpful postpartum resources.
Decorating and desserts
Swap baby bottles and other gadgets for breasts. Please note, it is advised to exercise care when dealing with breast models in childbirth and breastfeeding education as the symbolic dismembering of the female body can carry powerful negative messages, and the same care should be considered in this case. That said, these colorful, cloth breasts could be used to decorate or given out as party favors!
Try making breast cupcakes in all shapes and sizes or these fun cookies for a special treat.
Similar to popular taste testing games at baby showers, this game was inspired by Gill Rapley’s activity at an International Breastfeeding Conference to bring attention to babies’ autonomy.
Ask participants to partner up. Set out several pureed baby food jars in front of each pair. Each partner takes a turn spoon-feeding the mush to their partner. Open up a discussion about what it was like to be the feeder and what it was like to be fed. For more information about baby-led weaning visit https://www.ourmilkyway.org/the-baby-led-way/.
It is becoming increasingly popular for books to be requested in lieu of cards.
Denise Reynolds, a doula and Birthing From Within Mentor, wrote Labor as a Labyrinth inspired by a Birthing From Within concept developed by Pam England. Pass out or have participants design a labyrinth to follow along with mother’s journey.
Please tell us what other ideas you have for making a baby shower educational and meaningful. You can email us at firstname.lastname@example.org or write in the comments section below.
The field of lactation just gained another amazing care provider. Kenya Malcolm, PhD, CLC is a child psychologist, consultant, and trainer in Rochester, New York. Dr. Malcolm’s work focuses on programs and interventions in early childhood in mental health settings, preschools and pediatric offices. Among her many responsibilities, Dr. Malcolm is the HealthySteps program coordinator at a large pediatric practice.
Dr. Malcolm says, “The research is pretty clear that working with caregivers early to support children is the best way to promote optimal family and child health. So, that’s what I do!”
In fun, Dr. Malcolm is not only passionate about mental health, but she’s a self-described stationery nerd.
“I think that color coding is a great way to take notes and stay organized but I’ve been mocked for my pen collection!” she begins. When her LCTC instructor Dr. Anna Blair recommended using multiple ink colors on the Lactation Assessment & Comprehensive Intervention Tool (LAT), Dr. Malcolm says she felt validated.
She was again validated during the first few sessions of the course while learning about the benefits of breast/chest feeding not only for the baby but for lactating people.
“That’s when I knew I’d made the right decision to sign up for the course,” she reflects.
Because Dr. Malcolm is new to lactation counseling, she says that “every successful chest feeding story is my favorite right now.”
“All the moms have been so happy that they’re successful!” she explains. “I was not supported in breastfeeding my own kids when they were born and honestly, being a CLC is like an opportunity to be the superhero I wish I had 20 years ago.”
In becoming that superhero, Dr. Malcolm subscribes to reflective practice as a guiding principle in her work, and more specifically, in her leadership roles.
Dr. Malcolm remembers the words of one of the founding members of ZERO to THREE Jeree H. Pawl: “How you are is as important as what you do.”
Here’s more of what Dr. Malcolm had to say:
“Reflective supervision is a special kind of supervision that focuses on the practitioner’s own thoughts, feelings, and behaviors to support their ability to provide good care to the folks they are working with. Working with caregivers and children is tough work and usually includes navigating systems that are very siloed with rigid expectations. As humans, we often respond in ways that are just as much about ourselves as about the family in front of us. Reflective supervision is a necessary space for slowing down and looking at our actions to improve care, reduce bias and disparities, and improve the well-being of everyone involved. Reflective capacity is a skill and reflective supervision is considered a necessary component of support for people who are working with young children and families by most major organizations working toward the health of families.”
In Dr. Malcolm’s side gig with The Society for The Protection and Care of Children, participants introduce themselves with their baby pictures “as a way to hold in mine our own younger selves who continue to show up in our work.” The work focuses on training staff in Infant Mental Health (IMH) principles, Reflective Supervision, and infant/early childhood mental health conceptualization and diagnosis using the DC0-3 across New York state.
“One IMH principle is that we always hold the baby in mind,” Dr. Malcolm begins. “But it’s not just the baby in front of us. We also have to be aware of the baby whose needs are still present in our own selves. That’s why reflective spaces are so important. Our own biases and histories are present in all of our current interactions–another IMH tenant is that our early experiences matter– and we want to be mindful of how those are showing up in our work in both helpful and not so helpful ways.”
Dr. Malcolm tackles another big idea. Responding to an article on moral injury she wrote on social media, “I… think there’s a savior fantasy that many health professionals have that is sometimes traumatic to lose while in the field.” This phenomenon often rings true for lactation care providers. Dr. Malcolm advises doing the self- work it takes for true humility and reflection.
She shares this anecdote:
“I was observing a lactation counseling visit last week and a mom came in with questions about a possible tongue tie and some nipple pain with feeding. Since the latch was poor, the LC provided some strategies for improving latch that helped to address some of the pain. Like, mom agreed that there was less pain with position changes. But mom was not actually interested in working on latch; she was focused on the possibility of the tongue tie. The LC did a great job of talking through her observations and assessment and providing next-step ideas to Mom. But the LC and I really wanted mom to want to improve her latch. It would be easy to feel like that was an unsuccessful visit because we didn’t save the day in the way we wanted. But mom left feeling heard and supported. Many of us go into human services work to be a hero (I actually used the words “being a superhero” two answers ago!! I’m tempted to change that answer now, but I’m not going to.) of our own design. Families don’t need that. They need support to be at their own best.”
“… A proper ringing toast soothes the savage beast,” Karen Krizanovich writes. “Taste has a sound and it’s the thing with the ding that is the ding an sich of the memorable toast.” We teach our little ones civility and celebration and merriment at a young age; the clunk of a sippy cup meets a mug of coffee, toasting the adventures of a toddler. One mother shares that her 15 month old decided to start “cheers-ing” her breasts together before she nurses.
Parenting is serious business, and those who support parents through their responsibilities undertake weighty duties too, but amidst the seriousness, there is hilarity and light.
In 2019, we published Cheap medicine: laughter, where you’ll find research on laughter as it relates to infants, development, breastfeeding, and prosocial behavior.
This week, we’ve compiled a collection of breastfeeding-related material to make you laugh. Interestingly, in our search for funnies, we found that many of these pieces are reactions to the absurdity of infant feeding culture in the U.S. For instance, there is a comic depicting a breastfeeding dyad in front of an ad of a buxom woman. Two men approach, shaming the dyad, “Nursing?! This is a shopping mall! We can’t allow women to brazenly display their breasts!” It makes you chuckle, but of course the undertone is depressing. Nikki Lee wrote commentary on the real-life manifestation of this absurdity. Find it here.
In another case, humor is used as a coping and healing mechanism as well as commentary on the Pinkwashing of the breast cancer epidemic. Poet and performer Christine Rathbun Ernst’s delivery will make you laugh and ask you to consider some really raw, hard topics. Find her work here.
During her second pregnancy, a mother tested positive for cytomegalovirus (CMV). The CMV virus can cross through the placenta and infect a developing fetus, potentially causing birth defects or other long-term health problems. This mother was contacted and presented with the opportunity to participate in a clinical trial where she would be infused with a drug that would potentially mitigate the risks of her child developing congenital CMV.
The mother reports that because her child was already at risk, she saw participating in the trial as something she could do to avoid the risk of potential health problems.
The process of participating was relatively simple considering her work-from-home arrangement and having reliable child care for her older child.
At last, her daughter was born healthy and continues to thrive.
This mother reports that, until recently, she hadn’t considered what she would have done if something had gone wrong as a consequence of participating in the trial. She said that she’s unsure what kind of compensation might make up for a hypothetical injury to her child who was unable to consent to the trial. She emphasized that parents dedicate themselves to making the right decisions for their children, so the stress of raising a child with special needs coupled with the guilt of having made the “wrong” decision, could be shattering.
The inclusion of pregnant and lactating people in clinical trials is part of an evolving national and international conversation.
Earlier this spring, the Committee on Developing a Framework to Address Legal, Ethical, Regulatory, and Policy Issues for Research Specific to Pregnant and Lactating Persons held a workshop to discuss how institutions make risk-benefit decisions regarding the inclusion and exclusion of pregnant and lactating persons in clinical research, and the role of liability, risk management, and trial insurance in those decisions as well as reviewed existing compensation schemes for research-related injuries and potential to scale these models to serve the needs of research participants.
Historically, pregnant and breastfeeding women have been excluded from clinical trials, due to concerns about the real or perceived potential risks to the fetus or child. [FDA Voices, 2021] Namely, the thalidomide crisis in the 1950s largely shaped the culture around risk aversion and clinical testing on the pregnant population.
“A 2011 study on all medications approved by the FDA from 1980 to 2010 found that 91 percent of the medications approved for use by adults did not have sufficient data on safety, efficacy and fetal risk of medication taken during pregnancy,” the authors of Fair inclusion of pregnant women in clinical trials: an integrated scientific and ethical approach write. “At the same time, the number of pregnant women who take medications, as well as the number of medications that these pregnant women take, has increased.”
Today, health advocates are pushing for the inclusion of this population in clinical research on the basis that patients should have solid evidence in order to make informed decisions about their health.
“Not having this evidence can result in unfairness in the distribution of benefits and burdens (injustice) and can curtail the autonomy in making informed choice,” Catriona Waitt writes in Clinical trials and pregnancy. “This may make it impossible to provide the best treatment, undermining the principle of beneficence, and risking increasing harm.”
Speakers at the workshop cited several roadblocks to the inclusion of pregnant and lactating people in clinical research.
Institutional Review Boards (IRBs) are charged with keeping patients safe, so they often take a very conservative approach. [White, 2021] Elisa A. Hurley, PhD, executive director of Public Responsibility in Medicine and Research (PRIM&R) explained that the current framework does not encourage or assess the risk of not doing research on this population, and that the culture needs to shift from exclusion to inclusion as the default. Dr. Hurley cited the University of Washington where there’s been a shift to require justification to exclude pregnant and lactating populations.
Lorien Urban, Ph.D., Senior Medical Director Clinical Development at Ferring Pharmaceuticals pointed out that IRBs tend not to acknowledge a distinction between pregnancy and lactation when reviewing trials. In fact, while the placental barrier can be sensitive, there are very few drugs that pass through to mothers’ milk. [InfantRisk Center]
Metin Gülmezoğlu, M.D., Executive Director at the Concept Foundation argued that pregnant and lactating women should demand to be included in research, and that governments should react accordingly, assuming responsibility and taking action.
Gülmezoğlu’s project AIM responds to the created culture of risk aversion in the field. Gülmezoğlu said that risk aversion doesn’t get rid of risk; instead it shifts risk to another person: either the care provider or the pregnant person themself.
Risk is of primary concern for companies and organizations conducting research in these populations.
Sara E. Dyson, M.P.H., C.P.C.U.,Vice President of Underwriting Operations & Risk Management at Medmarc laid out the ways in which institutions can make their trials less risky and more attractive to underwriters:
demonstrate for the potential risk,
conduct significant bench testing,
conduct informed consent on video,
ensure compensation is reasonable and cannot be construed as coercion
consult with reputable IRB (multiple IRBs in some cases),
select a trial site (for instance an institution with specialty in high risk pregnancy)
Niranjan Bhat, M.D., M.H.S., Senior Medical Officer at PATH, shared that PATH’s global umbrella policy which covers any adverse event during participation of the study is a key research enabler.
Michelle Mello, J.D., Ph.D., Professor of Law and Health Policy at Stanford University and Renée J. Gentry, Esq., one of the leading experts on vaccine injury litigation in the National Vaccine Injury Compensation Program (NVICP), laid out the ways in which tort versus private compensation programs can be successful or unsuccessful in compensating injured clinical trial participants. In either case, proving causation tends to be the primary difficulty on the battleground for product liability.
The tort system is capacious enough to handle injury claims, Dr. Bello began. However, using Winston Churchill’s metaphor for democracy– “Democracy is the worst form of government – except for all the others that have been tried.”– it tends to favor the wealthy, is laborious in terms of time, and presents high volatility in terms of settled amounts.
Perhaps not a solid alternative, a system like NVICP, is at a “breaking point”, according to Gentry. The program started with eight special masters when it began in the 1980s; today this number remains. Set up to cover six vaccines, the program now covers 16 vaccines; as such the number of complaints have quadrupled in the past decade. People are waiting two to three years to have their trials scheduled. In fact, some seniors have died waiting for their trials.
Gentry advises that when considering the creation of a compensation system, there should be flexibility built in to include the modification of staffing levels and scheme.
In a private system, like the UW-Washington Human Subjects Compensation Program, this flexibility is a positive attribute; however, speakers pointed out that private systems do not address two major points:
A private system does not get around addressing causation difficulties.
A private system does not necessarily address equity and has the potential to lead to a patchwork of compensation of different solutions at different levels of generosity.
As health professionals, consumers and other individuals and organizations work to shape the legal, ethical and policy frameworks that affect research on the pregnant and lactating population, you might consider consulting the following readings and resources.
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