Questions Not to Ask a Pregnant Transgender Person*

* Or any pregnant person whose gender identity you are not absolutely 100% certain about, so really, ANY pregnant person.

I came out as a transgender guy and transitioned by changing my legal name, taking testosterone, and having top surgery. Friends and colleagues were generally awesome with that, and highly supportive. Virtually everyone I knew used male pronouns for me as I asked them to, and many made special efforts to help me feel accepted.

A few years later, I stopped taking testosterone and became pregnant, and my allies’ world was turned upside down. These are real questions that real people asked me. Let me explain why they are damaging, and what would be better. 

1.    Have you had surgery “down there”?

This one is a sign that somebody hasn’t thought things through, and I think it comes from the assumption that all transgender people want to transition “all the way.” Transition for a female-to-male individual must involve hysterectomy, right? Wrong! We transition in a variety of ways, to whatever degree makes us comfortable (or that we can afford). For some trans people, transition is not linear, either. You really don’t need to know whether your pregnant trans friend has had or desires any other kind of bottom surgery, such as clitoral release, urethral lengthening, or phalloplasty. Read about those procedures by Googling to your heart’s content.

2.    Are you going to keep the baby?

The person asking wants to know if the pregnancy was planned. Just like the rest of the population, some transgender people who become pregnant didn’t intend to have babies, but that’s not the case for all of us. The unpleasant implication behind the question is that a transgender person shouldn’t want to have (or shouldn’t have) a baby. A much better question would be “How are you feeling?” Your pregnant trans friend will disclose as much as they are comfortable with and might indicate how you can help.

3.    How do you know this is safe?

A lot of people assumed that because I had a beard and a low voice, I was still taking testosterone despite being pregnant. People asked me this as though I had never considered the issue before. To me, the question suggested that I was ignorant or didn’t care about my baby, or both. Even health care providers asked repeatedly if I was taking testosterone, seemingly not believing my answer.

Before trying to get pregnant, I talked to my endocrinologist (hormone doctor) and family doctor about any risks they could foresee. My endocrinologist advised me to stop taking testosterone and wait until my menstrual cycles became regular. He said that, in the form I was taking it, testosterone leaves the tissues quite quickly, typically within about ten days. He told me that my eggs should not be affected by my previous testosterone use. My family doctor just shrugged and reminded me to take folic acid!

If you have a transgender friend or acquaintance who is pregnant, you don’t need to ask this. If you’re a health care provider, knowing whether or not your patient is still taking testosterone is important. You also need to realize that for some of us at least, a beard doesn’t disappear when testosterone use is halted.

4.    Did you enjoy the process of making your baby?

This is just another way of asking a transgender person how they have sex. It’s weird and awkward. And for folks who don’t have simple access to sperm in their relationship, conceiving a baby might be separate from making love anyway.

5.    But what about breastfeeding?

I think breastfeeding is awesome, and I have been breastfeeding my kids for five years straight – but having a baby doesn’t hinge on it. I was asked about breastfeeding when I was pregnant, as if not being able to breastfeed should make me reconsider my pregnancy. The question itself put an immense amount of pressure on me. It turned out that I am able to make a small amount of milk despite having had chest surgery, and I deeply value my breastfeeding relationship with my child. However, lots of people, transgender or not, choose not to breastfeed, and that is their choice.

For friends and health care providers alike, a more open-ended question would be better, such as “how do you plan to feed your baby?” If you are lactating and interested in helping, you could ask if your transgender friend might wish to accept donated milk. 

6.    Do you know the baby’s gender?

During my pregnancies, people asked me this obsessively. I always thought to myself, do you know who you’re asking? Identifying a baby as male or female based on its genitalia has to do with its sex, not its gender. Furthermore, I never cared during my pregnancies about what my babies’ genitals might look like. I wondered if they would be healthy, happy, sleepy, curious, affectionate, serious, light-hearted, optimistic or any number of other characteristics before I thought about whether they had a penis or vulva. A better question to ask would be whether your friend has felt their baby move yet or heard the heartbeat – both are indescribably beautiful and intimate ways to connect with the being growing inside the belly.

Finally, I want to mention that a few friends have come out to me as transgender or genderqueer during or after their pregnancies. Friends, family, and health care providers interacting with a pregnant person might be unaware of that person’s gender identity. Be careful about the assumptions contained in your questions no matter who you’re talking to.

Malunggay: Breast Milk Super Vegetable

For those of us whose jeans are noticeably tighter as a result of endless holiday feasts, this is a post about an Asian super vegetable, called malunggay, that happens to be great for breast milk production. Ian and I need this more than most right now because we just returned from a trip visiting (and eating heartily with) Jacob's grandparents, after celebrating Christmas at numerous indulgent gatherings with our friends here in Winnipeg. It has all added up to way more meat, baked goods, and candy than we care to admit. We came home vowing to exercise more, eat healthier, and to avoid buying anything other than fresh produce since our pantry is overflowing with slimming foods like lentils and beans (nice that these foods have already been purchased – flying across the country was wonderful, but pricey).

Cooking malunggay into a curry

I first heard about malunggay when my dear friend and the very fancy author Diana West came to Winnipeg to speak at the Baby Friendly Conference in the fall. As a lactation consultant, she says that malunggay is her number one go-to food for increasing milk production. It is native to the foothills of the Himalaya and is sometimes called moringa, horseradish tree, benzolive tree, kelor, marango, mlonge, moonga, nébéday, saijhan, sajna or Ben oil tree. India is the largest producer of Malunggay, although it is also grown in the Philippines, Thailand, Taiwan, Malaysia, Africa, and Central and South America. Cultivation is in early stages in Hawaii for the US market.

Malunggay grows as a slender tree, with all its parts, including bark, stems, roots and leaves, being edible. The most nutritious part of the plant is the leaves, which contain, gram per gram, "SEVEN times the vitamin C in oranges, FOUR times the Calcium in milk, FOUR times the vitamin A in carrots, TWO times the protein in milk and THREE times the Potassium in bananas." A double blind study suggested that consuming malunggay leaves has a considerable positive impact on breast milk production.

Malunggay helps increase milk production

A number of companies include malunggay in capsules meant to increase one's milk supply, but I prefer to buy it fresh. I have found the leaves at several local Asian markets. I simply asked, "malunggay?" and got pointed in the right direction by someone who knew. The leaves are very versatile ingredients – they are wonderful in soup, but also delicate enough to be added fresh as a garnish to salads. One of the most traditional dishes that includes malunggay leaves is sour Thai curry.

Wish us luck with our New Year's resolution and let me know if you come up with your own great malunggay recipes. I'd love to hear them!

The Lorax and Other Milksharing Stories

World Milksharing Week's Blog Carnival is pleased to present two blogs in Spanish. Vilma Badillo Rodriguez shares posts from her blog, Borinquen Lacta con Amor. One story reveals how a milk donation allowed a family to get their first night of real sleep in three months, while another involves the good fortune of one mother suffering from low supply meeting a parent with a great abundance.

Jesusa Ricoy-Olariaga, drawing from Dr. Seuss, explains in the following post how as a society we have completely mistaken milksharing for what it actually is. She's brilliant – I can't say anymore, you just gotta read it! In English, below, and here in Spanish.

I was kindly invited by a breastfeeding dad - yes you read that right - to write a post on milk sharing.

I am currently on holiday in my home town of Alicante in Spain where my brain has gone into relax mode but have still found myself trying to stumble across a story for the purposes of this article.

I wanted to look back and find the commonality of women feeding their children, their sisters' children and their friends' children.

I spoke with my mother who recalled talk of milksharing in her own family but, it was in connection with an older brother who died before she was born. Then I met a Muslim friend in the street and we talked about how in her culture babies who are not part of the same family but have been breastfed by the same woman are considered siblings and therefore can't marry. I called some associations in Alicante and a lovely girl told me that although she didn't know where I could find historical information, she did mention that her late grandmother breastfed other children.

What I was looking for I couldn't seem to find so I just tried to relax with my family. So we rented the movie The Lorax based on the tale by Dr. Seuss. It's an ecological story of how greed destroyed nature until everyone forgot how nature looked like and what impact it had for ourselves and all the things around us. There is a point in the story where the main character is explaining what real trees are like and the evil guy trying to control everything reacts by shouting how disgusting the earth is and how it breeds dirt and bugs and pollutes the air. He has become rich and all powerful by selling bottled air to people in this polluted world and I couldn't help thinking of the similarities with the way milksharing is depicted today on the few ocassions that it is even mentioned: as something that is weird and disgusting, risky, dirty even, as something that it is alien to us when actually it's what makes us us.

Earlier this year a couple of friends had minor issues with their babies. The biggest problem was trying to gain support from professionals for formula not to be administered as a simple remedy. One midwife threatened my friend with calling the social services if she accepted donated milk from any of us which we had expressed, something that for me came naturally after feeling my milk building up as the mum was telling me she needed help. I never felt anything beyond the fact that a human baby needed milk, a friend's baby. I had milk so why wouldn't I help?  It was as natural as if someone was crying and I happened to have a handkerchief with absolutely no relation to the social perception of women fighting each other in their motherhood capabilities according to production, quality or endurance of their 'job'.

We do not do that. We mammals mother our babies. We nurture and care for them. We impose milksharing on cows. We steal their babies milk for our babies while we censor our own mothers' power and abilities because somebody once put a label to an imitation of something that cannot be imitated.

In The Lorax a tree was cut down. Then another and then some more until there were no trees left of even a memory of them. The perpetrator didn't have bad intentions. He simply saw that there was a need for his product.

Not that long ago there was a culture of normality of mothers feeding their babies, and indeed the babies of others. I am glad that even if I was personally unable to find out much from our past culture of milksharing, perhaps because milksharing was seen as an ordinary act of love within the greater matriarchal story that remains unwritten, I was thrilled to see so many references in my life to the new seed that will not allow our 'tree' - the milk of human kindness - to be forgotten. 

Our milk is ours. Our babies are ours.

Our milk is free. Our babies are too.

" UNLESS someone like you 

cares a whole awful lot,
nothing is going to get better.
It's not." Dr. Seuss  

Ps: This post is dedicated to Trevor Macdonald a breastfeeding dad and everyone who cares a whole awful lot.

Scared Milk-less

This beautiful, eloquent post by Lisa van den Hoven gives us a few straight truths about milksharing and helps put it all in perspective. What does it really mean to give your milk to a "stranger"? What exactly does milksharing look like?

Many thanks to Peaceful Parenting for hosting Lisa's piece in World Milksharing Week's Blog Carnival.

Lisa and her little one, who shares her milk.


Let’s talk about that controversial thing called milksharing. The facts, as I understand them, are that Emma Kwasnica, with the help of many other like-minded people, launched a global network, through Facebook, called Human Milk 4 Human Babies. The aim of the network is to connect moms who need milk for their babies, with other moms, who have milk that they can share. This was about meeting a need.The World Health Organization’s position on infant feeding is that if, for some reason, a mother is not able to feed her own baby, milk from another human mother is a better alternative than formula. Milk banks do exist that could theoretically meet this need, but there are some problems. First, there are very few of them, so the milk that they do have to give gets prioritized to very sick or premature babies - the infants that desperately need the milk. Second, milk bank milk is almost always pasteurized, which turns human milk from the living miraculous stuff that it is, into dead milk, losing much of its value. Finally, it costs money to access the milk of many milk banks. So even if your baby is among the few that make the cut, and you are happy to accept pasteurized milk, you may still have to come up with the cash to cover it.

The medical community is aware of how difficult it is to access human milk when you need it -- this is why they do not often advise mothers to try this option. Instead, supplementing with formula is quickly suggested. I do not intend to go into why this is such a poor choice here. Suffice it to say there are mothers out there for whom supplementing with formula is not an option that they are comfortable with. So, do they have to? Is there no other choice?

Let’s be realistic: human milk is not a scarcity! Many mothers have ample supply for their babies, and then some. Some women struggle with oversupply! It is also a vastly renewable resource - empty breasts will fill themselves again and again. It should not be so hard to connect people who need milk to people who have milk to give. And it turns out, it isn't. But fear is alive and well.

When a group of parents decided they were done waiting for the medical community to fix this problem, and opened up a way for donors and recipients to easily match up, there was massive push back. It must not be safe, right? People could have disease! You never know what they might be smoking in their spare time... That's just gross, anyway.

Really, all of the arguments against this wonderful, simple milksharing solution to a common problem sound the same to me as razor blades in apples at Halloween. I doubt that there are all kinds of sadistic, lactating weirdos out there, masquerading as concerned moms, handing out drug-laced human milk donations just for jollies.

Here are a few facts:

Human Milk 4 Human Babies donors do not charge for their milk. There is nothing to be gained by donation, save the truly awesome global village feeling that you are helping to feed another's child.

Milksharing is done person to person. That means you meet that person you are getting milk from. You ask questions. You go to their house and meet their family. And you decide whether or not your baby eats that milk. You decide.

This is not a new idea. Wet nursing has been done throughout human history.

And, now a confession: My name is Lisa, and I have donated my milk to a stranger.

Based on the oh-so-educated comments that I read elsewhere on the internet, a common reaction to this is, “Omigosh! Weirdo!” or maybe just, “Yuck. I could never do that.”

But before you decide how you feel about informal milksharing, read just a teensy bit more.

I say I gave my milk to a stranger, in that this was someone that I initially met over the Internet. But when she sat in my living room, with her husband and new son, and we chatted while my similar-aged daughter cooed in her swing nearby, stranger was not the word I would have used to describe her. It actually didn’t feel strange at all. We were just two moms. She had a problem, and I was in a position to help her out, in a meaningful way. I am so glad she was not too scared to accept my help. Donating milk was hugely rewarding for me, even renewing much of my faith in the spirit of community.

If only more moms were not scared milk-less. We don't always need to turn to the authorities to fix our problems. Sometimes, with a little courage, we can find our own solutions.


Lisa is Mom to two, wife to one, and lives in Winnipeg, Manitoba, Canada. She loves being busy in her local, gentle parenting community, and blogs occasionally at Swirls and Swings.

Related Reading:

Breastmilk Donation Page [This page was created prior to milksharing communities existing as they do in 2012. For many years peaceful parenting served, in part, to connect mothers with donors locally via email, phone and community networking. Today, thanks to the new mother-to-mother milksharing set-ups, we hear from far fewer who don't already have their needs met or connections established.]

Joshua's Story: Why I Choose Another Mother's Milk
Joshua's Story: Why I Still Choose Another Mother's Milk
Human Milk for Human Babies After Japan Tsunami
Reasons Not to Send Formula or Human Milk to Haiti and Other Disaster Locations
TIME Reports on New Global Milksharing
Delaney Rose: 6 Months of Milksharing
A Modern Day Wet Nurse
From Despair to Donation: A Mother Loses Her Baby and Shares His Milk

Overcoming Difference Through Milksharing

I've been having tons of fun reading and posting everyone's pieces for World Milksharing Week's Blog Carnival. After musing on it forever, I finally wrote my own today, about finding my place in the milksharing community.

I am a transgender man. I am in a gay relationship. I breastfeed my kiddo.

And I can tell you right now that I feel a deeper connection to our Mormon and Mennonite milk donors than I do to many of my other friends and community.

My past experiences as an LGBT person encountering religious folk have generally not been pleasant. Among many other comments, a Muslim friend once told me that being gay is worse than committing murder (I hadn't yet transitioned at the time), and a Christian noted that queer people burn in hell forever. My partner and I posted on Human Milk 4 Human Babies that we were a gay couple looking for milk for our baby, and assumed that LGBT-friendly donors would self select. We hoped that others would remain silent.

When I first realized that one of our milk donors, we'll call her Sherry, was Mormon, I was totally shocked that she would want anything to do with us. We had received her milk through a friend, and I thought that perhaps the original donor just didn't know much about us. We met for the first time a few days later, and Sherry gushed over our ten day old boy. In fact, I believe she said to him something like, "You make my uterus ache! Holding you makes me want another baby."

At that moment, I realized that Sherry and I had much in common. We both love holding babies, we are both attachment-minded parents, and we both really care about the health of babies – all babies. Sherry's milk maintained my son's normal gut flora on his fifth day of life, while a feeding of formula would have altered it, for the worse, for weeks to come.

Some Christian donors have told us that they don't understand everything about who we are, but they are open to learning, and they have a whole lot of respect for our commitment to breastfeeding and human milk. I am learning that there is great variety amongst individuals' religious paths. Not every Christian I meet is like the woman who once hurled the phrase "Jesus loves you" at me as if it was some kind of insult.

Outside the milksharing community, I often get comments like, "You're sure letting the baby run the show, aren't you? You know he would be fine. Formula isn't evil. It's ok to cry." I am simply responding to my son's needs – to be picked up, to nurse, to have human milk. I feel misunderstood, defensive and embarrassed when someone criticizes my parenting in this way. I know that I have done my own reading about everything from the risks of formula feeding to the effect of excessive cortisol in the brain of a baby who is left to cry. It's not that I lose confidence in what I'm doing when I listen to such remarks, but I very quickly feel that I am an unwelcome, "other" kind of person ("other" being a word I had previously associated only with being transgender in a cisgender world.)

A few years ago, I would never have guessed that my family's strongest, most supportive parenting community would include people who are aligned with religions that have deeply conservative threads. The milksharing community is incredibly diverse in terms of ethnicity, family structure, sexual orientation, financial status, religion, and language – it is expanding rapidly all over the world.

When one parent goes to the trouble to express and store her milk, and she posts on a social network to find someone to give it to so it won't go to waste, we know that she values human milk. When another parent responds to her post and drives across the city to pick up that milk rather than buying a can of formula from the corner store, we know that he or she prioritizes normal infant nutrition. Donors and recipients meet on the common ground of good health. It is that simple.

Biomedical Ethics and Peer-to-Peer Milksharing

Dr. Karleen Gribble, adjunct research fellow in the School of Nursing and Midwifery at the University of Western Sydney, has generously allowed us to adapt her PowerPoint Presentation to a blog post as part of World Milksharing Week's blog carnival. This post outlines Dr. Gribble's application of six ethical principles to health worker / patient interactions in the area of peer-to-peer milksharing. Rather than investigating the merits of milksharing itself, this piece looks at the obligations of health workers and parents to discuss the practice. Keep an eye out for Dr. Gribble's upcoming article on this topic in Clinical Lactation.

Many thanks to Jodine Chase, blogger at Human Milk News, for hosting Dr. Gribble's post in the carnival.

Photo: Bart Everson

Health authorities in Canada, the US and France have publicly warned parents not to feed their babies peer-shared milk. Many health workers are unsure about how to respond to mothers who are considering being involved in peer-to-peer sharing of milk.Applying the principles of biomedical ethics to the problem may assist in guiding action.

Biomedical ethics can be used to explore actual or anticipated dilemmas in medicine and find reasoned, consistent, and defensible solutions to moral problems.

Principle 1: Autonomy- individuals should be supported to make health care decisions free from deceit, duress, constraint and coercion.

Health Workers are obliged to provide individuals with the information they need to make informed decisions. Limiting of information for the “good of the patient” is paternalistic and interferes with autonomy. Information should only be withheld in very limited circumstances: if the health worker believes that the sharing of information might seriously harm the physical or mental health of the individual or if the individual states that they do not want the information.

Principle 2: Veracity- patients and health workers must be honest with each other.

When parents seek information about alternatives to a mother’s own milk, health workers must discuss all alternatives including infant formula, banked donor milk, peer-to-peer shared milk and wet nursing in an unbiased and non-judgmental way.

Parents must discuss consideration or actual involvement in milk sharing with their health workers.

Policies that prohibit discussing the option of peer-shared milk with mothers could be considered as breaching the ethical principles of autonomy and veracity. They are also dangerous.

Principle 3: Beneficence- minimization of harm and risk and promotion of good outcomes.

The interpretation of “good outcome” depends upon the specifics of a situation and the beliefs and values of the individual. Individuals seeking health care are those who define “good outcome.”

In peer-to-peer milk sharing, beneficence might involve health workers providing information or directing the patient toward information on the correct way of storing and dispensing expressed breast milk or on flash heating or on medications and milk. It might also involve facilitating the sharing of medical records between milk donor and recipient.

Principle 4: Nonmaleficence- active avoidance of harm to the patient.

A health worker who dismisses, mocks, berates or derides an individual seeking advice or information about milk sharing and so humiliates or belittles them could be considered as having breached the principle of nonmaleficence.

A health professional who withdraws care from a mother or child because they wish to be involved in the peer-sharing of milk and does not ensure that appropriate alternate care is available could be considered as having breached the principles of nonmaleficence and the principle of autonomy.

Principle 5: Confidentiality- health providers must not reveal private information without consent.

While sharing of medical records may assist in reducing the risks of peer-sharing of milk, donor records cannot be shared with a potential recipient without the consent of the donor.

Principle 6: Justice- individuals must be treated fairly.

Aspects of justice to consider in the distribution of resources include: distribution equally, or according to need, effort, contribution, merit or notwithstanding ability to pay.

The application of Justice to milk sharing has proven contentious in North America where donor milk banks are experiencing shortages of milk.

Milk banks distribute according to need but payment is required.

Peer-to-peer donors distribute for free and to those who do not qualify for banked milk.

Both groups are applying justice but neither application is unproblematic. Such conflict is not uncommon in biomedical ethics and indicates that further discussion between the players involved is necessary.

Health workers cannot ignore, dismiss, discount or demonize peer-sharing without acting unethically. What then should they do?

• Educate themselves about the various options for infant feeding including the benefits, risks and costs of each option and the ways in which the risks and costs might be managed, reduced or eliminated

• Be open and honest with mothers about each option and refrain from using pejorative terminology in relation to any option

• When speaking to the media ensure that information is provided in such a way that it cannot be used to portray breastmilk as inherently dirty and dangerous and that the risks associated with other alternatives to mothers' own milk are considered.

Getting Through Thrush With a Milk Donor's Help

I love this story by blogger Michelle Bowman. Her up-front and entertaining piece highlights a common nursing problem and shows us how the gift of donor milk enabled her to overcome it and breastfeed successfully. Like many recipients, Michelle didn't need all that much milk in order to get her own supply back on track. However, the relatively small donations made an enormous difference to her nursing relationship with her baby.

Sharing a happy moment after getting through very difficult times.

A month or so after I returned to work, my daughter and I got thrush. It's one of those chicken/egg deals. Who knows where it started, all I know is we had it.

It was so painful, I cried nursing, I cried pumping. My nipples were raw, red and even fabric hurt against my skin. And thus began the decline of the milk factory. Slowly, we were burning through my precious milk stash. My once ample supply, enough to feed multiple babies, dwindled down lower and lower. The pain I was having was preventing let downs while pumping, so I was no longer producing what I needed to produce for bottles during the day when I was at work. My in-laws were great, but they tended to be a bit liberal with the milk, always having a bottle on hand. Even if it was 4 in the afternoon, they preferred the security of a bottle in case Little Miss A started fussing. And since you shouldn't re-refrigerate a warmed bottle, we wasted quite a bit of milk in November and December.

Once Little Miss A started attending daycare in January, I was frantic for ideas. Hubby was about to leave to train for his promotion, and stress set in. If there's two things you should know about stress, it can affect your milk supply and affect your sleep patterns. I wasn't sleeping well, Little Miss A was still waking up multiple times a night and my milk supply suffered. Some days, I could pump 10-15oz when I was working. But most days days, I only pumped 3 or 4 oz total on my lunch hour. This was with galactalogues and extra pumping sessions.

I started testing formulas midway through January. I would make a bottle, she would either refuse, spit up, or take it. The ones she took, she ended up having such bad diaper rash that I would have to bust out the big chemicals. We tried four different formulas before I felt desperate. We tried three soy formulas. Little Miss A was NOT having it. She did not want a bottle, and she did not want it if it was not mommy's milk.
I started researching milk banks, figuring I could swing the purchase of milk through my flexible spending account. As long as I could get a physician's prescription, flexible spending would cover the majority of the cost. However, milk from a milk bank can cost around$4.50 per ounce, which could be anywhere between $300-$1200 per month depending on how much I needed to supplement. At that rate, I'd burn through our flexible spending in just a few months. Not only did the cost stop me, but milk from the milk banks are reserved for sick babies, usually preemies in the NICU. I was certain there would be a long waiting list for healthy babies to get milk. So, I was at an impasse. I wondered daily if I should wean entirely or if I should force formula supplement at daycare- I just did not know what to do. Now that I am thinking back, I cannot remember who told me about informal milk sharing, but I began connecting with other moms via Human Milk for Human Babies (HM4HB) and Eats on Feets.

I thought to myself: "If she can't get only mommy's milk, shouldn't it be milk from somebody's mommy?"

I met with a few women, one of whom is a nurse for one of the hospitals I work at, and is friends with some of my friends. You know, that whole small world thing? Totally felt that when talking with her. She has two children, a little one month old guy she was nursing and said she had over 100 oz to share. I felt safe feeding my child her milk- because she fed it to her daughter.

On Valentine's Day, I received our first milk donation. I finally could breathe again- I wasn't going to run out of milk for my daughter. This angel provided my daughter with over 150 oz milk. It was the BEST gift I received this year- nourishment for my daughter and with that, peace of mind. Over the next few months, we received a few more donations to fill in the gaps of what I was unable to produce. Now when I had a bad day with pumping, I didn't cry every time I pulled a bag of milk from the freezer. With the help of our "donor mom", as I affectionately call her, we made it to a year with breastfeeding. When I left my job in June, I still needed a little mama's milk for supplementation, but I have been able to rebuild my supply since and Little Miss A has been able to get all my milk again!

Milksharing and La Leche League

In this post, Laura Spitzfaden, IBCLC and Leader with the breastfeeding support organization La Leche League, tackles LLL's stance on milksharing. I love that she also addresses an important yet rarely discussed risk of milksharing. An incredibly thought-provoking read!

I was inspired to write about milk-sharing when I read this article by Amber McCann, IBCLC.

Like Amber, I am an International Board Certified Lactation Consultant. I am also a La Leche League Leader. La Leche League’s position on milk-sharing discourages leaders from providing moms with information about informal milk-sharing unless the mother specifically requests such information. If mothers ask a LLL Leader how to obtain human milk supplements for their babies, they must be directed to milk banks, even though the cost of purchasing human milk from a milk bank is prohibitive. In most cases, there is not enough milk available for the ill or preterm babies who need it, let alone any excess available for purchase for healthy babies. This is simply not a viable option for most families.

Avoiding the topic of informal milk-sharing does not take into account the changing social environment of the moms we serve. Through social media and the internet, mothers are more informed than ever about the risks of artificial feeding and about what their babies are missing if they do not breastfeed. Over the last few years, I have observed that informal milk-sharing has rapidly become commonplace. I am witness to many instances of mothers offering their milk to other mothers who need or want supplemental milk. Mothers are sharing their milk whether or not any organization believes it is safe.

While there are risks involved with informally sharing breastmilk due to the potential to spread illness or to expose infants to drugs or chemicals, those risks can be mitigated. It seems disingenuous to be concerned about contamination of breastmilk, when it is well documented that artificial feeding carries significant risks for babies and that formula is often found to be contaminated with chemicals and pathogens.

One risk of informal milk-sharing that I have not seen addressed is that accepting donations of milk from another mother, may put a mother’s own milk supply at risk. Often a mother believes she does not have enough milk or that there is something inadequate about her milk and believes she needs to supplement. If it is simple to get milk from another mother, and she doesn’t have access to information about all the risks and benefits of supplementation, she may not explore the reasons for her own supply issues or discover there is no problem with her milk supply. She may supplement unecessarily and unintentionally reduce the amount of her own milk that is available to her baby. If providing information about informal milk-sharing is discouraged, and focus is placed on the risk of possible contamination, the more significant risk to a mother’s milk supply is potentially overlooked.

Research into mother and infant sleep practices by Kathleen Kendall-Tackett, P.h.D., IBCLC, RLC, has shown that dictating to mothers what they should and shouldn’t do, doesn’t work. Telling mothers that they shouldn’t sleep with their babies in adult beds, only results in mothers falling asleep with their babies in even less safe environments, or ignoring the advice while being deprived of the information needed to make bed-sharing safer. Just as many breastfeeding advocates support mothers in bed-sharing with their babies, due to the belief that bed-sharing benefits breastfeeding, and its practice can be made safer, we can also support human milk sharing by providing moms with the information they need to make informal milk-sharing safer. I believe it is time for child health advocates to stop telling moms what to do and instead, provide all the information that moms need in order to make their own informed choices about milk-sharing.

While it is not possible to make any infant feeding option risk-free, mothers can be provided with the information they need to evaluate and minimize the risks and make their own informed decisions. The World Health Organization offers a heirarchy for infant feeding if a baby cannot be breastfed by his or her mother, “..expressed breast milk from an infant’s own mother, breast milk from a healthy wet-nurse or a human-milk bank, or a breastmilk substitute…” in that order. It is up to infant health advocates to help mothers to be informed of the risks and benefits of each option, so they may choose for their own babies.

Laura Spitzfaden, LLLL, IBCLC

In March 2011, the LLLI Board of Directors adopted the following policy regarding the donation of human milk: http://www.llli.org/release/milksharing.html

Mother-Infant Sleep Locations and Nighttime Feeding: U.S. Data from the Survey of Mothers’ Sleep and Fatigue-Kathleen Kendall-Tackett Ph.D., IBCLC, RLC et.al.

Supporting Families in Milksharing as an International Board Certified Lactation Consultant

This year's World Milksharing Week Blog Carnival includes posts by a wide variety of individuals, including donors, recipients, activists, academics, authors, and health professionals. I am thrilled to present this piece by Amber McCann, blogger and International Board Certified Lactation Consultant, about why she, as a health care provider, supports milksharing. She explains what people like her can do to help their clients make informed choices in milksharing, an area that many shy away from.

As an International Board Certified Lactation Consultant, I have, first and foremost, an ethical obligation to provide evidence-based information to my clients to support their breastfeeding relationship. Every day, for a variety of reasons, I encounter and encourage families who need to supplement their baby’s nutrition with something other than milk directly from the mother’s breast. Today, they have many options: pump and feed their own milk, supplement with some sort of donor milk, milk-based formulas, soy-based formulas, pre-digested formulas . . . lots of options, lots of questions, lots of opportunities for parents to be confused.

I believe that parents are capable of making the choices that are best for themselves and their families.

It is my job to make sure they have all the information to do so.

The World Health Organization, in its Global Strategy for Infant and Young Child Feeding, says,


“for those few health situations where infants cannot, or should not, be breastfed, the choice of the best alternative – expressed breast milk from an infant’s own mother, breast milk from a healthy wet-nurse or a human-milk bank, or a breastmilk substitute…depends on individual circumstance.”

Since this is coming from a global authority on health, I feel pretty darn confident using this hierarchy while supporting my clients in their supplementation decisions.

Most Ideal Option – Expressed breastmilk from the infant’s own mother.
Next Most Ideal Option – Breast milk from a healthy wet-nurse…SCCRREEEEECH!!!!

(do you see the virtual brakes going on???)

Wet nurse? Really? In this day and age? With HIV, hepatitis, and any number of undesirable diseases that can be passed through bodily fluids? What would wet-nursing even look like in today’s society? The first reaction of many is to simply pass off the idea as old fashioned, ancient, and outdated, not to mention dangerous. And in the United States, where I live, it is generally understood that if a mother’s own milk isn’t an option, formula is the obvious default. Why even bother?

Because we, as humans, are designed to consume human milk.

In our current environment, actual wet-nursing (a woman feeding another’s baby directly at her breast) is deemed by many to be inconvenient, too intimate, and—if you will—too gross. But what about the sharing of breast milk from one mother to another? Since most mothers have access to a breast pump, it has become increasingly easy to package milk in a shareable form. And with the formation of groups such as Human Milk 4 Human Babies (HM4HB) that provide a space for families in need to connect with families who want to give, doesn’t it make sense that we would at least explore the option? Can feeding a child the milk from a mother not his own be a viable solution to our supplementation needs? Is it an option that I, as an IBCLC, am willing to share with the families in my care? I answer with a strong and firm YES.

When I first became aware of milk sharing, it was a “secretive” practice, one not discussed openly and one that many organizations (breastfeeding supportive and not) chose to distance themselves from. When an article appeared on TIME.com in November of 2010 about the rise of the use of social media to facilitate milk sharing, I was quick to say “What can I do to help?” because the goal seemed obvious to me: get human milk into human babies.

What I wasn’t prepared for was the strong backlash from my own professional community saying, “But what if a baby gets sick or even dies?” Quite a number of IBCLCs I know were involved in milk sharing arrangements in their own breastfeeding years and some continue to be “closeted” about their own experiences. I attended the FDA meeting in December of that year discussing the regulations in regards to donor milk and while informal sharing wasn’t formally on the agenda, it certainly was on everyone’s lips in the room. There was palpable fear that one bad outcome from milk sharing would halt all the positive momentum that breastfeeding was gaining in our culture. One expert even spat out, “These women…these women who are doing this are going to hurt or even kill their babies.” I maintain that they are simply trying to feed them the food they were designed to eat.

But, what about the RISKS, with a capital R? Wouldn’t I be putting the health and lives of the babies I serve at risk if I offer milk sharing as an option? There is nothing in life that is without risk. Is milk sharing risk-free? Absolutely not. There are also risks to breastfeeding and formula feeding. Dr. Karleen Gribble and Dr. Bernice Hausman discuss these concerns in their paper Milk Sharing and Formula Feeding: Infant Feeding Risks in Comparative Perspective. In it, they discuss the issues of contamination of milk with pathogens, chemicals, concerns with milk collection and storage hygiene. The also discuss the risks to formula use that are not present when feeding human milk. In addition, there is a section devoted to the risk of HIV from the use of shared milk. I strongly advise every breastfeeding professional as well as any mother I am working with to read this paper and discuss their concerns. Drs. Gribble and Hausman conclude that “instead of proscribing peer-to-peer milk sharing, health authorities should provide parents with guidance on how to manage and minimize the risks of sharing human milk.”

How do IBCLCs instruct and inform clients about the risks and benefits of consuming or donating shared milk?

How do we advise our clients to mitigate those risks?

Photo via World Milksharing Week on Flickr

For recipients: When one of my clients is in need of milk and is considering milk sharing, I strongly encourage them to think about whether people they already know might be willing to donate. They also might explore location-based online milk sharing groups (like HM4HB), and then groups that facilitate broader-range sharing and the shipping of donor breast milk (like MilkShare). I do not condone the sale and purchase of breastmilk and I strongly encourage my clients to not consider it as an option.

No matter where the milk is coming from, I encourage my clients to thoroughly research what sorts of screening they consider essential (such as blood work from pregnancy and questionnaires about lifestyle choices such as alcohol and medication use). It is important that both parties have clear expectations about what their milk sharing arrangement looks like. At no point do I, as an IBCLC, engage with the recipient family as a “milk broker.” The family is fully responsible for finding, contacting and making arrangements with their milk donors. As an IBCLC, my role with milk recipients is only to provide information and resources.

Of note, it is always my hope that supplementation of any type can be eliminated or minimized because of an increase in a mother’s own ability to make milk. The milk sharing community is often particularly in tune with the need and desire of mothers to work hard to rebuild their milk supply. Some families get a donor and a cheerleader-in-one! Many mothers feed donor milk through the use of a supplemental feeder, which can help mothers to produce increasing amounts of their own milk by stimulating the breast while delivering the supplement. There are many stories of those who were in need of donor milk, were able to rebuild their supply and then donate milk back into the community.

Photo via World Milksharing Week on Flickr

For donors: I often have mothers, in their glee at how much milk their body is providing, send me an email saying they “had so much we had to dump it down the sink.” Nothing strikes panic into the heart of an IBCLC faster! If a mother tells me, as her lactation consultant, that she has more milk than she knows what to do with, I offer her information about donation. I share with her the options of contributing to a HMBANA milk bank, donating directly to another family or sharing her milk with a for-profit milk bank. (Though I have significant ethical concerns about these banks, I do share the information with my clients so that they can make the best decision for their family.)

I stress to the family that the milk they have is first and foremost for their own baby. I know that many families feel incredibly proud and thankful to be able to share of their excess. I encourage families to participate openly and honestly in all screening with their recipient family and to make sure that both parties have clear expectations about what their milk sharing arrangement looks like. At no point do I, as an IBCLC, engage with the donor family as a “milk broker.” They are fully responsible for finding, contacting and making arrangements with their milk recipients. As an IBCLC, my role with milk donors is only to provide information and resources.

An obvious question in all of this is why wouldn’t a mother in need of additional milk for her child simply obtain it from a milk bank? Then we wouldn’t be talking about risks of disease and contamination. In an ideal world, families would be able to receive ALL the milk they need from milk banks. Milk banks would be located in every community and have an unending supply of milk. I believe this can be a reality. I believe that there can be plenty of milk available to every baby that needs it. As a passionate advocate for getting human milk to human babies, Emma Kwasnica says, “milk is a free flowing resource.”

Unfortunately, in the United States, this isn’t yet the reality. As a nation, we need to drastically increase the number of milk banks and the amount of human donor milk available. The Human Milk Banking Association of North America (HMBANA) currently has 12 active banks. These banks do incredible work and, rightly so, their priority is on making sure that the MOST CRITICAL babies receive the milk that they process. For these little ones, having access to human milk can be, quite literally, a matter of life and death. Even this week, several milk banks, including those in Indiana and Utah, have issued pleas in the media for increased donations because their supplies are low. It is absolutely essential that these babies be the first to have access to processed donor milk.

Does every baby need its milk processed by a milk bank focused on the needs of vulnerable infants? For the most fragile babies, the complex processes of a milk bank (milk pooling, pasteurizing, and testing) are critical. The needs of a healthy term newborn are different. I liken it to this: If you had a dear friend who had recently received an organ transplant, you would do everything within your power to visit with them in a healthy manner by scrubbing arms and hands and wearing a mask. But, if that same friend has just gone through a “healthy” event, like birth, you would simply wash your hands. Different circumstances require different levels of caution.

Where does that leave healthy babies? In my practice, I see many mothers who, for of a variety of physical, emotional or circumstantial reasons don’t make the milk that their baby needs. At some milk banks, families of healthy babies can sometimes purchase donor milk but it is typically in limited quantities, and only available when supplies exist to meet the need of critical infants first. While the cost associated is reasonable, considering the cost of processing by the milk bank, it is often prohibitive to the families in need.

Is the only option for these families infant formula? I have every confidence that the human milk banking advocates all over the globe would affirm the belief that all babies have the right to human milk. I think that milk banking and milk sharing CURRENTLY serve very different populations of babies. Above all, my loyalties are not to milk banks or the milk sharing movement, but rather to babies and their families. There is room in the community for both methods of getting human milk to human babies.

 

I have been privileged to work with a number of families who were involved in milk sharing, both on the donor side and on the recipient side. I have seen milk donations have a significant impact on the health of a child. I have seen milk donations foster community that might not have happened otherwise. I have seen milk donations turn grief into hope. I have seen milk donations empower families and save babies’ lives.*

Milk sharing is not the right choice for every mother in need. Milk sharing is not the right choice for every mother who desires to donate her milk. But for many families, milk sharing facilitates health, community building, and an opportunity to reclaim the breastfeeding experience for those whose journey didn’t go as they planned.

Again, I affirm that parents are capable of making the choice that is best for their families.

It is my job to make sure they have all of the information to do so.

*A nod to Ursuline Singleton for her statement at the 2012 ILCA Conference that “IBCLCs empower mothers and save babies’ lives.” Thank you, Ms. Singleton, for so clearly helping to define what is essential to my profession.