Overcoming the challenges of living with low milk production

Lacy and her daughter

What’s in a name? For individuals challenged by Insufficient Glandular Tissue (IGT), the diagnosis can come to define their self efficacy and parental identity and confidence. It’s not uncommon for mental health to suffer in parents with IGT; for them to feel quite literally insufficient.

Insufficient education about the condition among care providers and limited research on supportive practices can often compound these feelings of failure in parents.    

Kaia Lacy, a mother of two toddlers, has surmounted the peaks and valleys of living with IGT, redefining what it means to live with the condition. 

A few months after her second child (now 19 months old) was born, she created a space on Instagram dedicated to IGT support, where there once was very little.  @lowsupplymom spreads “awareness about the experiences of low milk supply, and to remain a place where we can explore our journeys together, connect with others who understand them, find resources of support, and grow together in more confidence and knowledge, knowing we’re not alone.” 

Feelings of insufficiency 

Lacy’s early parenting experiences were marked by heartache and trauma.

While pregnant with her firstborn, Carl, Lacy set a goal to breastfeed her baby for four years. She hired a breastfeeding instructor at a local birthing center, read and researched about breastfeeding.

“I felt pretty confident going into it,” she reports. 

When her son was born, Lacy says she made sure to continue to “do everything right.” That meant Carl went skin-to-skin after birth and stayed there often, nursing many times throughout the day. Still, Carl’s weight gain was concerning. 

“We were checking all of the boxes and for some reason things just weren’t working,” Lacy remembers. 

In hindsight, Lacy says of her IGT, “A lot of red flag indicators went unnoticed.” 

Hoping for answers, Lacy hired lactation care providers who offered strategies to increase milk production. They told her “If you want it, it will work.” 

At one-month-old, Carl was diagnosed with failure to thrive. 

“He’d gone from 95 percent to two percent in his weight,” Lacy explains. “Seeing this lethargic and dehydrated baby, I felt so heartbroken.  It was a traumatic time for us. I felt insufficient as a mother, as a provider.” 

After Carl received treatment, Lacy continued to work with different lactation care providers attempting to boost her milk production. 

“I couldn’t get more than six ounces in 24 hours,” she reports. “It became so representative of this feeling of insufficiency.” 

Freed by information 

After four months, Lacy started feeding Carl formula exclusively. 

“Having distance from that experience helped me gain a lot of perspective,” she begins. “I had to grieve and process and understand what was going on in my body, and that’s when I started to learn about IGT.” 

That process of gathering information empowered Lacy. 

“It helped heal me and realize it wasn’t my fault,” she says. 

Released from guilt, Lacy went into her second pregnancy accepting that she might not be able to exclusively breastfeed. 

Extensive research alongside her lived experience helped her to realize that there are no opposites in infant feeding; instead, it’s a spectrum.

Graphic with variety of infant feeding options by @lowsupplymom

“I made it a part time job to pull information together and learn as much as I could about my condition,” Lacy begins. “I focused on the mental health aspect to manage my expectations and to be able to celebrate anything I could provide.”

It’s a sentiment she wants all parents struggling with low supply to embrace: it’s not all or nothing. Lacy’s Instagram page celebrates these variations in infant feeding and she acknowledges the worth in the decision to formula-feed. 

During her second pregnancy, Lacy harvested colostrum and went on to use an at-breast supplementer with her daughter Nora. 

“We became such pro-nursers,” she exclaims (as she and Nora nursed almost through the entirety of our phone call.) 

Lacy stresses that breastfeeding isn’t simply an “exchange of nutrients.”

“It’s something so beautiful. It’s such a sense of comfort. There are so many other functions.” 

Validating and uplifting others 

With a passion for helping people combat struggles similar to what she endured, Lacy hopes to guide them to a place of peace that she’s discovered. Scrolling through the comments on her Instagram page, one can sense the relief in many of her followers for having found a safe and refreshing space. Lowsupplymom offers uplifting encouragement, research and posts tinged with playful snark

Without dismissing this thriving community, Lacy says it’s frustrating that more medical professionals and care providers aren’t equipped with information about conditions like IGT, hypoplasia and other indicators for lactation failure. 

“I love supporting moms, but this should not be my job,” she says. “I’m just a mother on the internet with no accreditation, but I do it because I want to help move forward.” 

Having recently completed the Lactation Counselor Training Course (LCTC), Lacy brings a breadth of knowledge and compassion to the field of lactation. 

Her approach centers mothers and validates their experiences. 

She points out that a recent online poll she conducted revealed that the number one red flag for low supply  that was missed by providers was no breast changes in pregnancy or postpartum. 

“Everyone should be told that,” she says. “If there are signs of primary lactation failure, we need to engage in an emotionally sensitive way and support mothers’ goals, mental health and the safety of babies.” 

Addressing parents struggling with low supply, she continues, “You’re not alone. Your worth is not dependent on how much breastmilk you make. You deserve support and that’s the bottom line.”

Evidence-based safe-sleep practices to ensure that all babies and parents sleep safely

 As universal as sleep is, it’s amazing how taboo a subject it becomes when tiny humans are involved. New parents are often confronted with questions from friends, relatives, health care providers and even strangers wondering how well their baby sleeps. 

Image source: National Action Partnership to Promote Safe Sleep https://www.nichq.org/safe-sleep-and-breastfeeding-image-gallery

“Is she a good sleeper?” leaves much room for interpretation. Are babies considered good sleepers if they follow biological norms or if they adhere to the unrealistic, cultural sleep standards that we’ve forced upon them and their parents? 

It is uncommon for parents to receive solid, evidence-based sleep recommendations for their babies, and with roughly one third of adults in America sleep deprived,  it’s no wonder parents seek and find solutions on their own. 

Breastfeeding families might find that bed-sharing inadvertently happens, but might be hesitant to speak with their care providers about safe bed-sharing behavior since it is often but falsely prescribed as never acceptable

Some families discover a diverse collection of sleep training methods that promise sweet, sweet sleep despite the consequential effects of sleep training, which can be frustrating to lactation care providers as most sleep training methods are also detrimental to breastfeeding relationships.  

Amidst the taboo, the confusion and the desperation for good sleep, there is the tragedy of the approximately 3,500 infants who die from sleep-related causes every year in the U.S.

National Institute for Children’s Health Quality (NICHQ) just wrapped up its campaign advancing advocacy, protection, and promotion of evidence-based safe-sleep practices to ensure that all babies are sleeping safely in celebration of Sleep Awareness Week 2021.

Image source: National Action Partnership to Promote Safe Sleep https://www.nichq.org/safe-sleep-and-breastfeeding-image-gallery

The organization has compiled a wealth of evidence-based safe-sleep strategies and resources like their social media toolkit, conversation modules for health care providers, a literature review  and more. 

You can access all of their resources here including articles on health equity for safe sleep and breastfeeding outcomes. 

Challenged by omphalocele anomaly, mother builds resilience, calm and empowerment

Denise Bruno apologized for the background noise on our call; she was mixing her daughter’s drink, who, 29 years ago, was born with an omphalocele defect and spent just shy of one year in the NICU.

The Bruno family

Mariah wasn’t expected to live, Bruno tells me. Anticipating her baby’s birth in early summer 1991, she was put on bedrest in March. Mariah was born on May 29, 1991.  

“I didn’t hold her until she was a month old,” Bruno recalls. 

Without any kind of lactation support, Bruno pumped her milk which was given to Mariah through a gastric tube. No one on their health care team acknowledged Bruno’s efforts or the importance of human milk for her baby; and while Bruno credits her milk for seeding Mariah’s immune system and in part, her survival, she says that pumping her milk was terribly difficult. 

“It was a horrible feeling for me because I felt like I wasn’t a mom,” she explains, noting that she never experienced early bonding with skin-to-skin snuggles. 

Mariah endured severe complications from the surgery to relocate her organs into her abdominal cavity,  open heart surgery, a medically-induced coma, hip surgery, a serious infection, and more. 

When Mariah turned nine months old, Bruno became pregnant with her second baby. Later she had two more daughters. 

“I think, how did I ever get through all of that?” Bruno wonders. “If someone told me ahead of time, this is what your life is going to be like, I would have thought I couldn’t do it.  Mariah’s experience made me such a strong person.” 

With such resilience, Bruno’s greatest desire is to help others. 

Amidst severe medical challenges, welcoming new family members, and everything else life threw her way, Bruno started nursing school, became a certified yoga instructor, a massage therapist including infant massage, trained as a doula, and worked in a pediatric office and a women’s center. 

Ultimately, she decided to stay home to care for Mariah, although she’s still practicing massage therapy and using other modalities to help bring calm to people’s lives. 

“Infant massage and instructing yoga help me in helping others in this beautiful experience in bonding and making it calm and memorable,” Bruno adds. 

Most recently, Bruno completed the online Lactation Counselor Training Course (LCTC). Before the course went online, it was inaccessible because she couldn’t leave her daughter to travel to the locations that it was being hosted. 

“When I could do it online, I was like oh my god, I have to do this!” she exclaims. 

Bruno reports appreciating most the course’s emphasis on counseling and empowering mothers to feel like they are enough. 

Even through her most tumultuous times, Bruno says she harnessed the power of positive thought

“I would put music up to my belly and think positive thoughts,” Bruno recalls of being on bedrest during her pregnancy with Mariah. 

She hopes to impart this idea of mental strength on the new families she works with. 

Bruno offers a last bit of advice: Always keep an open mind and listen to what parents have to say. 

She stresses the importance of honoring parents’ instincts too and urges care providers to approach families holistically, rather than thinking compartmentally: “This is the problem; I have to fix it.” Most often, it’s more than that, she explains. 

“Listen and get the whole picture,” she advises. “Offer guidance and reassurance.” 

With this approach, parents and their babies have the best chance at building resilience, finding the connection we need to thrive, and cultivating the energy to pay it forward.

Making an Informed Decision on Vitamin K Prophylaxis

By Donna Walls, RN, BSN, IBCLC, ANLC
With introduction and contributions by Jess Fedenia 

Source: United States Breastfeeding Committee.

The concept of shared decision making is based on the tenets that patient autonomy is an ethical imperative, and several important outcomes of care are improved when individuals feel involved in their own health care decisions. 2,3 However, shared decision making can be misconstrued and therefore misused.

I bought cream for the first time in my three decades on Earth in an attempt to calm the bulging bags under my eyes. I slabbed on the ointment, wondering why in the world I felt and looked so tired. 

Soon after, I learned about a phenomenon called decision fatigue and it all started to make sense. 

Annie Reneau explains it this way in her Scary Mommy piece:

“There is a commonly overlooked stressor in childrearing…It’s a well-known psychological phenomenon, and I’m not sure why we don’t talk about it more in parenting circles… We usually think of having choices as a good thing, but making decisions zaps our mental and emotional energy. Even small decisions, such as what to wear or what to have for dinner, require our conscious attention and thought. Every time we make a choice, we go through a process of weighing pros and cons, risks and benefits, costs and rewards. Our brains go through that process even if we aren’t cognizant of it, and the energy expenditure occurs whether we want it to or not. More decisions mean more drained energy and lowered willpower.” 

Adding to parents’ choices, COVID-times have exasperated the fatigue . On top of the normal slew, now we wonder about things like if it’s safe to leave the house, if we should send our kids to in-person classes, if we should get the vaccine, and so on. 

Healthy Children Project’s Donna Walls, RN, BSN, IBCLC, ANLC has prepared an article about making an informed decision on vitamin K prophylaxis providing us with historical and scientific context. To add personal perspective, I’ve peppered in my experience on choosing the vitamin k injection for my three children.

Historical insight into vitamin K administration 

Photo by Jonelle Yankovich on Unsplash

In 1961 the American Academy of Pediatrics (AAP) began recommending all newborns receive a vitamin K injection as part of routine newborn care. The recommendation was made after review of research which confirmed the administration of vitamin K as an effective preventative treatment for the condition called vitamin K deficiency bleeding (VKDB). 

Historically, in 1894 Dr. Townsend of Boston first described 50 cases of bleeding in newborns which he called “Haemorrhagic Disease of the Newborn (HDN).” Then, in 1930, a Danish biochemist, Carl Peter Henrik Dam, discovered that vitamin K deficiency was the cause of unexpected bleeding in baby chicks, for which he won a Nobel Prize. In 1944 Jorge Lehmann, a Swedish researcher studied 13,000 infants who were given 0.5 mg of vitamin K (either oral or injection) on the first day of life. The published research confirmed that infants who received vitamin K experienced a 5-fold reduction in the risk of bleeding to death during the first week of life. It was estimated that for every 100,000 full-term infants, vitamin K would save the lives of 160 infants per year (Lehmann 1944).

Vitamin K is a co-factor which plays an important role in the formation of coagulation (blood clotting) factors, reducing the risk of abnormal or excessive bleeding. Infants are at increased risk for VKDB until they are regularly eating vitamin K-containing foods (e.g. dark green leafy vegetables, broccoli, brussel sprouts, cashews, kidney beans), usually at 6 months of age, and until their intestinal bacteria start producing vitamin K.  At birth, babies have only a small amount of vitamin K stored in their bodies as very little passes to the fetus from the mother during pregnancy, and breastmilk contains low amounts of the vitamin. Formula provides more vitamin K than breastmilk, making VKDB risk greater in  exclusively breastfed infants than for formula fed infants. 

Exclusive breastfeeding is considered the gold standard of infant feeding, so how can we make sense of this apparent deficiency?  It is theorized that similar to the digestive and immune systems, the coagulation mechanisms will naturally mature during the first months of life. (Dekker, 2019)

Breaking down Vitamin K Deficiency Bleeding

VKDB presents as early, classical or late.  

Early VKDB:

  • occurs in 1 in 60 to 1 in 250 newborns.
  • presents in the first 24 hours of life.
  • is severe and found more frequently in mothers requiring anti-seizure medications, some antibiotics, anticoagulants or isoniazid for tuberculosis treatment.

Late VKDB:

  • is rarer occurring in 1 in 14,000 to 1 in 25,000 infants.
  • occurs within two to 12 weeks and presents as bleeding in the brain or intestines.

Classical VKBD:

  • presents in one to 7 days as bruising and bleeding from the umbilical cord or the circumcision incision. 

Infants who do not receive a vitamin K injection at birth are 81 times more likely to develop late VKDB.  (CDC Fact Sheet)

Infants may develop any of the following signs of VKDB: bruises, especially around the baby’s head and face, bleeding from the nose or umbilical cord, skin color that is paler than before.  InBabies of Color, gums may appear pale.

After the first three weeks of life, the sclera (white part of the baby’s eyes) may turn yellow.

Stool may have blood in it or appear black or dark and sticky (also called ‘tarry’). Babies may also vomit blood.  

Irritability, seizures, excessive sleepiness, or a lot of vomiting may also all be signs of bleeding in the brain.

If or when any of these symptoms are recognized, parents should call their infant’s healthcare provider immediately.

The AAP provides their policy statement on vitamin K injection which reads as follows:

“Because parenteral vitamin K has been shown to prevent VKDB of the newborn and young infant and the risks of cancer have been unproven, the American Academy of Pediatrics recommends the following:

  1. Vitamin K1 should be given to all newborns as a single, intramuscular dose of 0.5 to 1 mg.
  2. Additional research should be conducted on the efficacy, safety, and bioavailability of oral formulations and optimal dosing regimens of vitamin K

to prevent late VKDB.

  1. Health care professionals should promote awareness among families of the risks of late VKDB associated with inadequate vitamin K prophylaxis

from current oral dosage regimens, particularly for newborns who are breastfed exclusively.” (AAP, 2003)

Jess’s experience:

Like many of the decisions I made with my first child, we opted for the vitamin K injection, because that’s “what ya do.” Willow was born in a large hospital, and while I was very firm on wanting a non-medicated, vaginal birth and breastfeeding soon after, the other choices I left up to whatever the hospital’s norm was. That meant Willow got the vitamin K injection, Hep B vaccine, and antibiotic eye ointment by default. Looking back, I wonder if my non-decisions had something to do with decision fatigue. 

“The more choices you make throughout the day, the harder each one becomes for your brain, and eventually it looks for shortcuts…the ultimate energy saver: do nothing. Instead of agonizing over decisions, avoid any choice,” author John Tierney writes in this piece.

I was a young mom, fresh out of an undergraduate program and internship. My decision-making capacity may have been maxed out.  

Rejection of and concerns over vitamin K injections in newborns 

Photo by Sergiu Vălenaș on Unsplash

There have been some controversies surrounding the routine administration of newborn vitamin K. 

A growing number of parents in the United States refuse the vitamin K injection for their newborns raising concerns among care providers.  (Loyal, 2017

Reasons for refusal include:

  1. Concern about causing pain in their newborn
  2. Concerns about the ingredients in the vitamin K injection solution (preservatives and other additives)
  3. Concerns about possible allergic reactions. 
  4. Perception that vitamin K injection may cause childhood cancers (Golding, et al, 1992)  There is ample research to quell parents concerns. For instance, research  does not support any correlation between the vitamin K shot and the development of childhood cancers including leukemia or solid tumors. 

Only one case of allergic reaction has been reported and that was with an intravenous injection. 

Additives have been minimized ( e.g. propylene glycol was reduced by 30X the previously used dose) or removed from the injection solution. A “preservative-free” formulation is also available upon request. In order to diminish pain during the time of the injection, cuddling, skin-to-skin, and breastfeeding before, during and after the injection are all effective ways to manage the infant’s pain. If the mother is unavailable, a cloth with the maternal skin and milk aroma can be made available for the newborn to inhale.   There are some reported cases of redness or irritation at the injection site but these have been shown to be mild and temporary.

Jess’s experience:

When I became pregnant with my second child, I opted for a home birth with midwifery care. I felt in charge of my perinatal care and therefore more involved in every aspect of decision-making.

Before I found out the sex of my baby, my husband and I debated vehemently over circumcising our potenitally-male child. 

Researching male circumcision led me to research the vitamin K injection. Dekker’s Evidence Based Birth website was an awesome resource, and although we didn’t need to make a decision about male circumcision because Iris was born with female parts, I could make an informed decision to opt for the vitamin K injection. 

I had considered oral administration (more on that later) for my second baby to avoid an injection, but worried that with a toddler and a new baby,  I wouldn’t be able to keep up with the demand of multiple doses. I also worried about the efficacy if spit up. 

Ultimately, the injection didn’t seem to cause any discomfort; Iris and I laid skin-to-skin and she breastfed while our midwife administered the injection. 

When my son was born, we also opted for the vitamin K injection, mostly because I knew I would breastfeed him leaving him at risk for developing VKDB.   

Increasing Vitamin K through maternal diet 

Source: United States Breastfeeding Committee.

Can eating more vitamin K-containing foods or supplements during pregnancy or breastfeeding increase vitamin K levels in the newborn? In a 2018 systematic review and meta-analysis, researchers pooled six randomized trials (over 21,000 pregnant people) from the US, the United Kingdom (UK), the Netherlands, and Japan. This review found no difference in newborn bleeding with vitamin K supplementation, but there was improvement in maternal vitamin K levels, including in breast milk, and levels in newborn cord blood. (Shahrook et al. 2018)

Injection vs. oral administration 

Many parents who have voiced concern about causing pain in the newborn have opted for the oral route of administration. 

The 3-dose, 2 mg regimen of oral Vitamin K1 does lower the chance of VKDB to less than 1 in 100,000 births, but does not eliminate it as effectively as the injection (Mihatsch et al. 2016). If the weekly oral vitamin K regimen is used, because it is a fat- soluble vitamin, it should be given with a feeding and must not be spit up in order to be effective .

Sankar found that “Between the two routes of administration of vitamin K, [intramuscular](IM) route was found to be more beneficial than the oral route in the two studies from Germany and the United Kingdom. The reported RRs for IM and oral routes were 0.03 and 0.2, respectively, in the former study and 0.01 and 0.35, respectively, in the latter study. The disadvantage of oral vitamin K may possibly be due to poor absorption and a shorter duration of effect. Indeed, multiple oral doses of vitamin K seemed to offer an advantage over a single oral dose”. (2016) 

There has been improved efficacy demonstrated with multiple doses of vitamin K, but it does require repeated doses. Worldwide, the process of tracking and contacting discharged parents for completion of the multi dose regimen is of concern. (Sutor, 1999)

Weighing the risk and benefit 

As healthcare providers and parents, we all must consider the risks and benefits of any and all treatments and care protocols for our children. From an evidence-based approach, it appears  that the risks of VKDB  are greater than the risks of the intramuscular vitamin K injection. For those parents who prefer the multi dose oral prophylaxis, a system that assures completion of the regimen must be in place.  Effective, open and honest communication between parents and their infant’s care provider is essential for all informed decision-making and the vitamin K decision is no exception.

 

References

Afanasjeva, J. Administration of Injectable Vitamin K Orally. Hosp Pharm. 2017 Oct; 52(9): 645–649.

Published online 2017 Sep 8. doi: 10.1177/0018578717729663

Ardell, S. et al. Prophylactic vitamin K for the prevention of vitamin K deficiency bleeding in preterm neonates. Cochrane Database of Systematic Reviews. 2018;https://doi.org/10.1002/14651858.CD008342.pub2

CDC National Center on Birth Defects and Developmental Disabilities.  Protect Babies from Life-Threatening Bleeding — Talk to Expectant Parents about the Benefits of Vitamin K Shot for Newborns. n.d. https://www.cdc.gov/ncbddd/blooddisorders/documents/Vitamin-K-Provider-p.pdf

Committee on Fetus and Newborn Controversies concerning vitamin K and the newborn. Pediatrics. 2003; 112: 191-192 

Dekker, R. Evidence on: The Vitamin K Shot in Newborns. 2019. https://evidencebasedbirth.com/evidence-for-the-vitamin-k-shot-in-newborns/

Golding, J. et al.  Childhood cancer, intramuscular vitamin K, and pethidine given during labor. BMJ.1992; 305:341-346.

Lehmann, J. Vitamin K as a Prophylactic in 13,000 infants. Lancet. 1944. 243(6294): 493-494.  https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(00)74175-4/fulltext

Lowensteyn, Y. Increasing the dose of oral vitamin K prophylaxis and its effect on bleeding risk. European Journal of Pediatrics. 2019; 178: 1033-1042 https://doi.org/10.1007/s00431-019-03391-y

Loyal, J. Factors associated with refusal of intramuscular vitamin K in normal newborns. Pediatrics. 2018; 142: 1-6

Mihatsch WA,  ESPGHAN Committee on Nutrition, et al. Prevention of Vitamin K deficiency bleeding in newborn infants: a position paper by the ESPGHAN committee on nutrition. J Pediatr Gastroenterol Nutr. 2016 Jul;63(1):123–9. https://doi.org/10.1097/MPG.0000000000001232.

National Center on Birth Defects and Developmental Disabilities, CDC. Vitamin K deficiency bleeding. December, 2019

https://www.cdc.gov/ncbddd/vitamink/facts.html

Sankar, M.J. et al. Vitamin K prophylaxis for prevention of vitamin K deficiency bleeding: a systematic review. J Perinatol. 2016 May; 36(Suppl 1): S29–S35.Published online 2016 Apr 25. doi: 10.1038/jp.2016.30

Simes, D.C, Vitamin K as a Diet Supplement with Impact in Human Health: Current Evidence in Age-Related Diseases Nutrients. 2020 Jan; 12(1): 138. Published online 2020 Jan 3. doi: 10.3390/nu12010138

Stachowiak, A.  and Furman, L. Vitamin K Is Necessary for Newborns. Pediatrics in Review June 2020, 41 (6) 305-306; DOI: https://doi.org/10.1542/pir.2019-0146

Sutor AH, von Kries R, Cornelissen EA, McNinch AW, Andrew M. Vitamin K deficiency bleeding (VKDB) in infancy. ISTH Pediatric/Perinatal Subcommittee. International Society on Thrombosis and Haemostasis. Thromb Haemost 1999; 81(3): 456–461.

How to better serve birthing individuals who are deaf or hard of hearing

American Sign Language (ASL) has been in the news recently. Hand Waves Birth Services’ Childbirth Educators and Full Spectrum Doulas Ally Balsley (she/her) and Brittany Noschese (she/her), say that they are hopeful that this move will influence our nation’s overall effort to be more inclusive and accessible. 

“This is only the beginning of more to come,” they write in an email interview.  “This move should be inspiring to all the health workers and for them to recognize the great need of accessibility for everyone.”

Ally Balsley and Brittany Noschese of Hand Waves Birth Services

Individuals who are deaf are challenged by a chronic lack of access to healthcare information. Balsley and Noschese explain that those who are deaf often struggle with improper translation and communication with their care providers.

Recent research shows that individuals who are deaf and hard of hearing have a higher risk for pregnancy and birth complications and that the infants of individuals who are deaf and hard of hearing are more likely to be born preterm, have low birth weight, and receive a low Apgar score. Authors note that causes of these disparities have not been determined, but they believe that health care providers’ shortcomings in communication may play a large role. 

Alicia Pittman is a clinical coordinator at an acute care hospital working as a Speech-Language Pathologist and she says that language access is crucial to appropriate healthcare. 

“…Lack of information impacts patient outcomes,” Pittman begins.  “In this study, it was found that Deaf patients reported fear, mistrust, and frustration during healthcare visits. It was reported that having a medically trained ASL Interpreter present, reduced these concerns and caused the patient to have a more positive experience.”

Mitra and colleagues add that individuals who are deaf or hard of hearing are at a higher risk for stress, depression, anxiety, and interpersonal violence, which all can influence pregnancy and birth outcomes of course. 

The Hand Waves team suggests that care providers can better nurture the mental health of those in  the deaf community by providing resources and therapy primarily from those who know ASL and have experience with deaf culture. 

“Deaf community is their culture and it plays a big factor in their lifestyle so having professionals who are experts with knowledge in this culture helps greatly,” they explain. “The healthcare providers should have a list of proper referrals ready if needed to best serve the deaf community, and with that, they would be able to ensure that they would be able to receive and ask for the information and support they need.”

Photo by Jonathan Borba on Unsplash

Video Relay Interpreter (VRI) services can be effective, but the Hand Waves team explains that these services are faulted for having poor connections sometimes. They add that deaf individuals don’t always receive transparent information from their medical providers.

“It is pretty common for deaf individuals to receive basic selective information from the providers,” they explain. “Due to the lack of details, the families are limited in making informed decisions.”

Abigail Shipp, CBD(CBI), CBE(CBI), SBD, CLC  is a Certified Birth Doula and Childbirth Educator, Certified Bereavement Doula, Certified Lactation Counselor (CLC) and Certified ASL interpreter practicing in the Omaha metro, Papillion, Bellevue, and Southwest Iowa areas. Shipp echoes many of the barriers Balsley and Noschese describe. 

“Access to information is extremely limited,” she says. “[Deaf individuals] are limited to the providers they can choose from, due to lack of interpreters, and the ability for smaller, private practice providers to provide interpreting services. So right off the bat, they are immediately penalized due to their deafness in not getting the provider of choice.”

In an article by Angela Skujins about growing up with deaf parents, the author explores the role of CODA, an acronym for the “Children of Deaf Adults” stating  that “many CODAs act as interpreters for their parents from a young age, and this can mean taking on responsibilities generally reserved for adults.”

The Hand Waves team writes to this point, “It is unethical for health providers to use family members, especially children, to interpret for their families.  It is incredibly important to have a certified interpreter to do that role as a neutral person in the conversation.” 

Shipp brings up another barrier: effective translation even when a hired interpreter is present. 

“…Interpreters may not be skilled in the language of birth, postpartum, or lactation,” she explains. “They may not be comfortable interpreting these topics, thus interfering with a smooth interpretation of the information.”

Photo by Walaa Khaleel on Unsplash

The Hand Waves team adds: “Currently, there is not a specific place where you can learn the signs for certain words related to the birthing world. We would encourage reaching out to those who teach ASL, possibly take classes on general signs in ASL, and immerse yourself in the deaf community by going to deaf events.” 

They continue that the deaf community’s primary language is usually ASL rather than written English.

“So when they don’t receive the information in ASL, they are not receiving the information in the language where they can fully comprehend and receive full access to the information,” they write. “It is legally and ethically your right to have an ASL interpreter on site or VRI depending on the deaf individuals’ preference.” 

Shipp shares one of her experiences in a role where she was asked to fill in as an interpreter instead of the doula role in which she was intended.

“I was attending a birth [but] because the mother was not yet six centimeters dilated, the interpreter was not allowed to stay and be compensated for their time. Think of all of the communication that happens during labor: the questions from nursing staff, the responses from the laboring mother… that information could not be conveyed, simply because the mother was not yet six centimeters in labor. So then that put the family, the staff and myself in an awkward situation where they relied on me to interpret for this family, when I was there in a support role. Imagine if I hadn’t been there, how would communication have happened?” 

Balsley, Noschese and Shipp all break down how maternal child health professionals can better advocate for the deaf community: 

  • Ensure a proper referral system with those who specialize in serving the deaf community.
  • Make sure patients are comfortable with provided interpreters; be sure they have a choice in what kind of interpreting services they prefer.  
  • Allow time for the interpreting process and give the patient time to express themselves.
  • Provide scholarships for members of the deaf community to become certified in birth and lactation work.  Find a volunteer-based resource list of deaf/signing birth workers here
  • During in-person classes, set up seats in a circle or semi-circle so vision is not obstructed.
  • Check in often to ensure the individual follows what is being taught or explained. 
  • Include videos, props, pictures and hands-on performances to help communicate. 

    Photo by Luiza Braun on Unsplash

Pittman recalls many infant feeding success stories and shares that they all have one thing in common: collaboration with a lactation care provider who can help parents with their infant feeding goals.

There are several ongoing efforts to gather the experiences of the deaf community to better serve birthing people. Find them here and here

“Every birthing person’s experience matters,” The Hand Waves team writes. 

You can connect with Shipp here:

www.bellylovebirthdoula.com

www.omahachildbirtheducation.com

www.facebook.com/bellylovebirthdoula

www.facebook.com/omahachildbirtheducation 

And Balsley and Noschese here.