Abstract
The process of human milk donation and sharing for the promotion of infant health is a phenomenon of interest as it directly affects children's health and well-being. Although its prevalence is currently unknown, informal sharing of human milk is occurring across the United States. The U.S. Food and Drug Administration recommends against informal sharing of human milk. However, the Ultra-Orthodox (Haredi) Orthodox Jewish population, who strictly observes Jewish laws and often consults with rabbis before making medical decisions, is known to donate and obtain milk through informal sharing. The objective of this study was to explore the lived experience of informal donation from the perspective of Ultra-Orthodox mothers from the Northeastern region of the United States who engaged in milk sharing to support hospitalized at-risk infants. Women were interviewed by an Orthodox Jewish member of the team, using a semistructured interview guide. Informal milk sharing was regarded as a positive empowering experience. Themes which illuminate the phenomena of milk sharing include faith, mistrust of the medical establishment, a strong reliance on social connectedness, and importance of sacred cultural traditions. Health care providers need to be aware of these specific needs to provide culturally sensitive care for safer milk sharing practices in cloistered and faith-based communities.
Introduction
The American Academy of Pediatrics recommends the use of pasteurized donor human milk (PDHM) before the use of commercial formulas for optimal infant health. 1 In the hospital setting PDHM is obtained from a nonprofit milk bank, which is governed by the Human Milk Banking Association of North America (HMBANA) or from a for-profit company. The use of PDHM from nonprofit HMBANA milk banks is increasing in the United States. 2 However, outside the hospital setting in the community, families have limited access to PDHM and may make the decision to informally milk share. 3 Despite the fact that the Food and Drug Administration discourages informal milk sharing, many families choose to engage in this practice.
In 2005, Israel-Ballard and colleagues have demonstrated that flash heating of human milk on the home stove top is effective in destroying HIV. 4 In light of this option, the World Alliance for Breastfeeding Action (WABA) provides recommendations for home pasteurization of human milk when families decide to informally access milk. 5 Thus, families who engage in informal milk sharing should be aware of this method for destroying viruses in human milk while still retaining many of the beneficial components of human milk. 6
In 2016, the American Academy of Nursing (AAN) was the first professional organization to offer a position statement providing guidance for health care providers to assist families in making informed decisions and the safest way to engage in this practice. 6 The Academy of Breastfeeding Medicine also released a practice guideline on informal milk sharing. 7 Some hospitals have developed policies and waivers surrounding the use of informally shared milk in the hospital setting. 8
There are three main branches of Judaism; Orthodox, Conservative, and Reform, with many commonalities, but also important distinctions. 9 Although Orthodox Jews constitute only 10% of U.S. Jews, this population gets married earlier and has significantly higher rates of birth than the general U.S. population. Much of this population lives in the Northeastern region of the United States.10,11 The subset of Orthodox Jews known as Ultra-Orthodox Jews strictly adheres to all laws set forth by the Torah (The Old Testament) and the oral teaching of the Talmud, including laws related to health care, childbirth, and infant feeding. Among Ultra-Orthodox Jews, the adherence to Judaism is more than religion; it is a way of life.
Ultra-Orthodox Jews represent a religious minority whose behavior and dress identify them as being different. 9 There is preference of continuity for members of the Ultra-Orthodox Jewish community that is passed down from previous generations. Fearful of assimilation, members of this community are wary of outside influence to prevent exposure to the secular society and to preserve the religious community. 12 Many members of the Ultra-Orthodox community maintain cultural attitudes and beliefs from previous generations. This includes matters of breastfeeding and women's health. 13 The Orthodox Jewish community is a population thought to routinely share milk among community members in need.
Breastfeeding is valued and recommended by Jewish tradition as reflected in several Talmudic discussions. 14 Eidelman reports that the Talmudic references confirm a strong endorsement of the superior qualities of human milk, the recommendation for extended breastfeeding for 2 to 4 years, and the unique social and economic rights of the breastfeeding mother. 14 The rabbis consider human milk the vital nutritional source for the first 2 years of the infant's life and set forth laws to ensure the supply of breast milk. 15
Eidelman further concludes that because the Talmud explicitly focuses on the positive values of human milk and breastfeeding, it is understandable that Jewish women may have a deep religious and cultural commitment to breastfeeding. 14 Of note, there is no alternative nor is there any form of artificial feeding written in the Talmud.
Pikuach Nefesh, saving or preserving life, is a fundamental principal for Orthodox Jews when considering decisions about health care. Life is viewed as a divine gift, which is to be treasured and protected. This principal creates an imperative, such that most other religious obligations are permitted or required to be set aside if doing so will result in saving a life. Every person is seen as being created in the divine image in the Judeo-Christian belief system. As such, every person has inherent dignity simply by virtue of their existence. Assistance to any person, especially those in need, is considered a virtuous deed or Chesed (act of loving kindness). This principal provides for breaking all other Jewish laws, if needed, for the critically ill to preserve life. The case for the provision of human milk to vulnerable infants with its proven medical benefits and reduction of mortality and morbidity can certainly be argued eligible as Pikuach Nefesh.
Some Rabbinical authorities, including Rabbi Moshe Isserles (Rama), considered the imperative for a woman to eat kosher while breastfeeding, as on a spiritual level it is believed that what a person eats affects his or her soul. As the composition of human milk changes with diet, it therefore may reflect what the lactating woman has eaten. Ultra-Orthodox Jewish families may thus request donor milk from mothers who keep kosher. These differences in religion cultural attitudes, norms, and mores of these subgroups create a particularly challenging environment for health care providers in their attempt to offer families the highest quality of care. What might be a perfectly acceptable treatment plan suggestion for one Jewish family may not be appropriate for another. The experiences of Orthodox Jews, more specifically Ultra-Orthodox Jews as members of a cultural and ethnic group, also influence their views, values, and perspectives related to health care matters. The recent experience of Jews during the Holocaust may contribute significantly to the way a Jewish patient experiences life events. This is especially poignant in relationship to Jew and their trust of the medical establishment. 12
Rabbis play a central role in this population. According to Candelaria et al. the role of the Rabbi is to guide the interpretation and adherence to Jewish law (halacha). 16 In addition, many families turn to them for guidance on medical matters. Health care professionals may also need to educate Rabbis when engaging in the process of conferring with the patient's Rabbi to develop a treatment plan consistent with the patient's religious views and values.
The objective of this study was to explore the experience of informal donation among Ultra-Orthodox women who have informally shared their milk as a Chesed, an act of loving kindness, to support critically ill, hospitalized at-risk infants.
Methods
Design
This study was reviewed by the Molloy College Institutional Review Board and was approved. A qualitative phenomenological approach to develop an understanding of the essence of the phenomena of informal milk sharing was used. This design was chosen due to paucity in the literature regarding milk sharing in this community. Semistructured telephone interviews were performed by an Orthodox Jewish member of the research team to promote cultural sensitivity and provide a trusting environment. This type of interview style was utilized to guide conversation while allowing the participant to focus on their individualized experience. Participants were asked to describe their experience with informal sharing, including but not limited to the sharing process, motivating and facilitating factors, concerns and cultural considerations, and the role of the family and Rabbi.
Sample and setting
Data collection occurred from October of 2018 to June of 2019 across the Northeastern geographical region of the United States. Inclusion criteria included English speaking women over 21 years of age who self-identified as Orthodox Jews and reported sharing milk informally to a member(s) of their community. Exclusion criteria included bereaved mothers, those who were compensated for their milk, or those who donated to a milk bank.
Data collection
Using a purposive sampling method, mothers were recruited through snowball technique, personal networks, and social media connections. The researcher established first phone contact, introduced herself as a member of the Orthodox Jewish community, and explained study procedures. Once the women decided to participate, a mutually agreed upon date and time were chosen for the interview. An informed consent was reviewed and signed by all participants before interview. Data saturation was reached after 14 interviews. All participants agreed to be contacted following the study for validation. Demographic data and breastfeeding history were collected before interview. The researchers utilized a semistructured interview guide with probes (Table 1). Each participant was asked to describe how they first learned about milk sharing, their lived experience, and motivating and facilitating factors. Each participant had the opportunity to share their feelings, concerns, and views related to informal milk sharing. The researcher utilized self-reflection, journaling, and field notes to be aware of any personal bias.
Interview Guide
Interviews were audio recorded using three digital audio recorders following permission from each participant and professionally transcribed. Transcripts of each interview were examined for accuracy. All data were stored on a password protected computer with a secure server. All paper files and filed notes pertaining to this study are in a locked cabinet at Molloy College in Rockville Centre, NY.
Data analysis
Each interview was sent to an approved transcriptionist through private server, and data were uploaded to NVivo (QSR International Pty Ltd. Version 11) qualitative software to aid the researchers in management, analysis, and coding. Themes related to the phenomena were visualized and extrapolated. Data were coded and analyzed using Edmund Husserl's philosophical framework and Colaizzi's method of analysis. Findings were validated by returning the exhaustive description to participants to confirm that each theme accurately characterized their lived experience.
Results
Data saturation was achieved after recruiting 14 subjects. All participants self-identified as Orthodox Jews, married, and residing within the Northeastern region of the United States (Table 2). Seventy-nine percent (11/14) of participants reported having four or more children, and 93% (13/14) reported average breastfeeding durations of over 6 months (Table 3). All participants reported donating their milk directly to a Neonatal Intensive Care Unit (NICU) at a nearby hospital. Four primary themes emerged from the rich descriptive narratives to describe the phenomena of milk sharing: Faith, Fear of the Establishment, A Strong Reliance on Social Connectedness, and Community Cohesiveness and Cultural Practices.
Demographic Characteristics of Participants (n = 14)
Breastfeeding Demographics of Participants
Faith
The theme “Faith” represents how participants thanked God for their milk supply and the ability to feed their own infant while donating to others. Participants prayed while expressing and pumping, thinking about the recipient, their family, future, and community. The participants describe reciting Psalms or other prayers while expressing their milk. For example, Miriam explained:
My milk comes from Hashem (God), my body created new milk for another baby, I am helping Hashem's other children.
Participants understood and appreciated the magnitude their gift would have on the lives of others:
We all just help one another, we felt by doing this we were giving ourselves over to Him. It was more than actually helping the child it was providing hope for the parents and family.
Participants described the importance of God, their creator, and the reciting of Psalms over their milk.
This (my milk) is one of the most powerful things that God has created, I would routinely recite psalms over my milk before it was picked up for delivery.
I thank the “man above” (God) who helps me to give this milk.
Participants experienced a strong desire through their faith to aid other infants and families in their community, understood how their milk would help the recipient, and that the long-term effects of their gift would continue to touch the lives of many.
Fear of the establishment
The theme “Fear of the Establishment” represents how participants were fearful that they might be doing something wrong or illegal while sharing their milk. They were hesitant to answer questions related to how they heard about the sick child in need and means in which their milk was delivered to the institution (hospital) of the recipient. For example, Rivka noted:
The hospitals have so many rules, I don't want to say anything wrong and mess things up where the baby won't be able to receive any more donor milk. I'm not sure who picked up my milk, I think the hospital thought it was the mother's own milk and it wasn't.
Avigail described how things were kept discreet with the others involved:
Things are kept very private. I don't know who else may have been involved, we just did what we believed without thinking whether we were allowed or not, like with hospital protocols. There were always different drivers, the milk was dropped off at the security desk quickly labeled with date and time, I didn't ask any questions.
Social connectedness
The theme “Social Connectedness” represents the means in which participants received information and instructions on how to increase one's milk supply and how participants were connected to other Orthodox families in need of human milk. Bina noted:
Somebody posted that they needed milk for a sick baby in a social media group that I am a part of, many mothers had commented on the posts so I felt safe to say that I had a freezer full and I could help.
Goldie said:
It was very easy to do because all the instructions are online, I learned how to make my body make more milk, so I still had enough for my baby at home. The women were all supportive and encouraging online it was like one big family working together to care for our community.
Deborah explained how she first learned about a sick infant in need and the process of delivering the milk:
A van driver that brought my children to school asked if I was still nursing and if I was willing to help out with a baby that was sick and needed mothers' milk. He explained how several women (in the community) were helping this particular child and put us in contact with each other so that we could arrange to have milk dropped off around the clock to help the infant in need, so we all started working together to make that happen.
Dina explained:
We fed the baby for a period of five weeks and took turns delivering the milk to the hospital, when they no longer needed milk I looked online to see if there were any other families in need to begin the process again.
Malka was connected with several other mothers in the Orthodox community for a terminally ill child in need of human milk through a popular social media website after she posted that she had extra milk. She explains:
I got a message from a woman who said she was looking to find out if I still had milk available because there was a sick baby in need so I wanted to help more so I called all of the nursing mothers I personally knew and five of them donated to this child.
There was a strong reliance on social connectedness through word of mouth and online social networks that connected breastfeeding mothers with families in need and provided instruction and support to facilitate the process.
Community cohesiveness and cultural practices
The theme Community Cohesiveness and Cultural Practices described how participants are bonded by a strong sense of shared values, similar ancestors, customs, and meaning and purpose in life. Many participants did not personally know the recipient family only that they were another Orthodox family in need and that was all they needed to know.
Rivky shared:
We all just help each other because we can. It doesn't make any difference who it is going to so long as the baby needs it, we do it. Five of us pulled together to help save the baby, we never got to see him but knew it would help him, so we all worked together and the five of us fed that baby for several weeks.
Tehilah explained:
I would do anything for any baby in my community, most of us felt that way so we just do it, we feel that if we could we always should. I guess, you know we just help each other, we give our all.
Participants explained how they would help any baby in their community in need. When asked if they would share with other babies outside of their community, they said that they would for a baby in need but would prefer to share within their community first. Participants experienced a very strong desire to help others, understood that their milk would help the recipient, and that the ripple effect would continue to touch the lives of many over the child's life. In addition, participants valued that their milk had special value because of the fact that mothers adhered to a kosher diet. Therefore, the milk would be considered Kosher and this is not something that would be available to families from nonprofit milk banks.
Discussion
Informal donation has been described as a positive, valuable, and nurturing experience. Participant's faith in God supporting their milk production, their generosity toward others, and a generalized apprehensiveness of the secular community, use of social media, and the medical establishment are highlighted in several themes, which illuminate the shared experience of the Orthodox Jewish mother who engages in milk sharing. By understanding the processes of informal milk sharing in a particular cultural group, health care providers can be knowledgeable about the nuances in practice to help inform decisions for any family, both donor and recipient, who choose to engage in milk sharing. Informal milk sharing may help women to reach personal breastfeeding goals and improve breastfeeding exclusivity and duration when it is done safely.
Conclusions
The specifics of informal milk sharing in the Ultra-Orthodox Jewish community should be acknowledged. Due to the cloistered and homogenous comprisal of this faith-based minority group, a partnership of religious and/or spiritual advisors within the health care team is especially important for culturally sensitive care, given the intensely personal and individual nature of this phenomenon of interest. This type of collaborative approach enables health care professionals to provide care in alignment with patients' cultural values and beliefs. This includes sensitivity and incorporation of the families' core values, which are often influenced by their culture and/or faith traditions.
The Food & Drug Administration recommends against parents informally milk sharing. 17 However, in this faith-based community, the use of informally shared milk can be considered a respected and valued cultural norm. Ultra-Orthodox families may be unwilling to use PDHM from a HMBANA milk bank because milk would not be considered Kosher. As health care professionals, we must be respectful of families' personal cultural and religious beliefs. In addition, only about half of all NICUs in the United States utilize PDHM. Every child has the right to the highest available standard of health, and every mother has the right to information on the benefits of human milk, both maternal and banked. The lack of safe access to PDHM has many implications for the promotion of breastfeeding and lends to the practice of informal sharing.
Informal milk sharing can be considered culturally suitable in the Ultra-Orthodox population. In this study, we learned the emotional and social value placed on informal donation. With informal donation on the rise in many cultures, it is imperative that breastfeeding health care providers continue to recognize and create programs to support these women. Cultural awareness refers to an awareness of how culture and potential biases have influenced one's self. 18 Following cultural awareness, health professionals should seek cultural knowledge to provide care that is culturally appropriate for the specific population and to view the woman's beliefs and values from within their worldview as it affects their health and illness. 19 Understanding these cultural practices and working with this community can lead to a more satisfying breastfeeding experience among Ultra-Orthodox Orthodox Jewish families. All infants have a right to human milk for the promotion of health. If mothers choose to obtain milk through informal means, it is the role of the health care provider to make sure it is practiced in the safest manner possible.
Footnotes
Acknowledgments
We wish to thank all of the participants who were willing to share their experiences.
Disclosure Statement
No competing financial interests exist.
Funding Information
This research was supported by a faculty grant from the Molloy College Hagan School of Nursing. All authors have seen and approved this article.