How to Not Conduct a Study about Peer Breastmilk Sharing

A recent study on peer breastmilk sharing has been done. You’ve probably seen the headlines. I’ve seen a few. For example, the New York Times  headline is “Breast Milk Donated or Sold Online Is Often Tainted, Study Says” Other headlines also scream doom and gloom.

What this study  really seems to boil down to is this: A researcher obtained samples of breastmilk using questionable methods that don’t duplicate real life and that seemingly exclude any responsible donors as well as common sense.

The study has issues. Big issues.

EXCLUSION OF RESPONSIBLE DONORS

From reading the study… A researcher contacted 495 people through peer breastmilk sharing communities with a “standard inquiry”. 206 of those people dropped communications or never responded to the inquiry. (For 57 of those the researcher chose to drop communication because the donors asked about the baby that would be getting the milk or asked to speak on the phone or meet in person.) 84 people backed out before milk was sent and three people apparently accepted payment, did not send milk, and did not refund what they were paid. 101 samples were eventually tested (after being stored for a period of time). In other words MOST people wanted nothing to do with the researcher even though they were getting paid and being asked for a small amount of milk.

The study did not share what their “standard inquiry” was, but from what they did share I was able to glean this: they did not speak about the infant that would be receiving the milk. They asked for small amounts of milk (it sounded like about 3 bags worth which would be approximately 18oz based on a 6oz bag size) and they left it up to the sender to provide whatever information the sender wanted to provide about themselves. They also allows the sender to choose whatever shipping method they thought was good (ice… no ice.)

Anyone who has donated milk will see where the HUGE MAJOR WARNING BELLS start clanging.

For those of you not familiar with how milk sharing works.. A “standard inquiry” would typically be an introduction. “Hi, my name is Margaret. I am looking for a donor for my baby Harry who is nine months. I saw your post on SpecificMilksharingCommunity. I am trying to help Harry have breastmilk for the first 12 months of his life. Unfortunately I have hypoplastic breasts which means I have a hard time producing enough milk. Harry gets my milk and donor milk through a SNS.”  In other words it TALKS ABOUT THE BABY. It talks about the reason the milk is needed. It talks about mom.

From there the donor and the recipient will talk and become a bit more comfortable with each other. Typically the donor will share why they decided to become a donor. Why do they have extra milk? What are they like? Who are they? The recipient usually has a lot of questions. The donor and recipient may choose to share medical paperwork including blood test results, a medical diagnosis of failure to thrive for the infant, a pediatrician’s letter stating that the baby needs donor milk, a medical diagnosis for the mother who is requesting the milk, and sometimes even a drug test depending on the diligence of the recipient. Video chats, phone calls, facebook friending. There is usually substantial contact.

Compensation, if discussed, is generally in terms of “would you like me to send you milk bags to replace the ones you’re sending the milk in? Do you have a preferred brand?” Often the recipient sends the cooler and packaging supplies to the donor as the recipient has more experience with how they want the milk shipped.

After the “getting to know each other” period has passed then the donor and recipient will talk about how to get the milk from the donor to the recipient. There are two ways that are generally accepted. The first is meeting in person. The second is Fedex overnight. Expensive. Only worth it (and only safe) if large amounts of milk are being sent. (Enough to fill a styrofoam shipping cooler without any extra room). This will be hundreds of ounces. Many bags. Not three. And you won’t be using any method that takes up to two days without dry ice.

If someone contacted a responsible donor, refused to speak in person or over the phone, dodged questions about the infant, requested a small amount of milk, was willing to pay for it, and asked that it be shipped to a PO Box?  Honestly I’d be picturing a skeevy man in his 50’s that wanted to bathe in the milk. I’d hit “delete” faster than you could say “pervert”. I’m willing to bet that a lot of the people who simply never responded or that dropped contact at any point… Those warning bells started clanging. In fact the people who did end up sending the milk? They probably suspected that it would be getting used for something that they didn’t want to know about, and they just wanted to get paid. (Which is why I’m very much against selling breastmilk.)

SHIPPING/STORAGE DO NOT REFLECT REAL LIFE

Would you drink a baggie of cows milk from the grocery store that had been shipped two days ago without ice? I accidentally left a glass of cow’s milk on the counter for a few hours when I took the kids out to the playground. When I returned it had solidified into a rancid smelling yogurt-like texture. This is pasteurized cows milk from the grocery store. FDA gold standard certified safe for the public.

NO ONE asking for breastmilk to be shipped to them.. Is going to be okay with small quantities being shipped without dry ice. (edit: large amounts can and should be shipped without ice as long as they fill a styrofoam cooler to capacity of about 200+ ounces with the empty spaces packed with newspaper. The entire time in transit should be less than 24 hours with this method.) If someone DOES get a fully thawed bag of rancid milk and feeds it to their infant there are some severe issues there and the issues aren’t with milksharing the issues are with unsafe feeding practices and the person should not be left alone with an infant regardless of what they are feeding the infant. Feeding a baby milk that has been unrefrigerated for 48 hours is NOT… NOT… safe. No matter what the source of the milk is. If the milk is fresh pumped from your own breasts in a pristine sterile environment using sterile equipment and then left to sit on a counter in your own home for 48 hours and you feed it to your baby? Still a problem. The MAXIMUM amount of time you’re supposed to leave human breastmilk without refrigeration or some method to keep it cool is 10 hours. That’s freshly pumped milk. You do NOT leave frozen milk out after it has thawed. Regardless of the source.

Responsible recipients that receive shipped milk? They discard any bags that have fully thawed even if they are still cool to the touch. Slushy bags are allowed to finish thawing and are used immediately or discarded. Only fully frozen bags go into the freezer.

The milk that the researchers received? It was stored at -20C for up to two months before the sample was analyzed. In other words it would seem that some of the milk that had thawed was… refrozen. That violates breastmilk storage guidelines 101. Which was part of the researcher’s claims. But I’m unsure how the researcher’s possible incorrect handling of milk works into the study. “If you handle breast milk incorrectly it will become full of bacteria”. Sounds about right.

SO WHAT DOES THE STUDY SHOW? ARE THERE ISSUES WITH MILK SHARING?

Absolutely. There are issues with milk sharing.

People don’t know how it works or how it’s supposed to work or how to do it safely. Apparently even the people doing the research don’t know how it works. (Unless it was the intention of the researcher to specifically exclude responsible donors through its screening process and initial inquiry– if they wanted to truly study milksharing they would have obtained samples from people who had received donor milk rather than seemingly chasing after the worst of the worst.)

Donor milk is just as much of a sabotage as formula if used incorrectly. A lot of people are lead to believe that they have a low supply when the issue is something else entirely. (Tongue tie, flow preference, a pediatrician shooting for the 50th percentile or higher across the board or comparing breastfed babies to formula fed ones.) ANY supplementation can sabotage mom’s supply. Donor milk included. And that’s a problem for a lot of reasons. http://nurshable.com/2012/06/18/when-donor-milk-is-no-different-than-formula/

People don’t know how to properly express in a hygienic way. Or sometimes don’t take hygiene seriously. You know? Like that woman you /heard/ in the next stall who just walked out without washing her hands? Eww. (That said, pumping breastmilk is a LOT of work. And storing it properly is also work. If you get hundreds of bags of meticulously labeled flat-frozen milk.. That took a lot of effort. Surely it took more effort than a few baggies of milk shipped without ice. She also presumably pumped for her own baby who she likely cares a great deal about. )

Mistaken Beliefs of Safety. I suppose there are people out there that think that milk obtained from someone you know absolutely nothing about and that you have never spoken to in-depth is as safe as milk from the grocery store. There are also grocery stores that sell expired milk. And there are also people that buy milk without checking the expiration date. There are people that don’t refrigerate cold cuts. That don’t wash produce before eating it. There are people that aren’t aware that powdered formula isn’t sterile and that expired infant formula is often sold. There are people that aren’t aware that you have to measure the water and then add the formula to the water rather than measuring the formula and then adding the water otherwise your formula won’t be mixed properly. In fact most people don’t seem to understand how to safely prepare infant formula. Regardless.. There are people that will probably obtain and use free breastmilk just because it’s free. Just like someone might obtain and use free formula just because it’s free. (Their babies eat the “whatever’s free on the classifieds today” brand.)

You’re not just dealing with the donor, you’re also dealing with her husband. Your donor can be the most lovely person in the world but if her partner is sleeping around behind her back at all then she may not have a full picture of her STD status. Don’t just get to know your donor. Get to know her partner.

The whackadoo wildcard exists. There are whackjobs out there. They’re thankfully rare. But they do exist. This is one of the reasons I’m vehemently against the selling of breastmilk. There’s been issues with expired formula being sold. Once you introduce profit into anything you’re going to have problems. Since the study author purchased milk I’m surprised that there weren’t more problems with the samples that were received.

SO WHAT’S THE GOOD OPTION?

I absolutely agree with where the study author speaks about limited options available when a mom can’t feed the baby her own milk. Our system is completely broken for moms and for babies. Moms get sabotaged. Doctors are not well educated about lactation. There are some terrible lactation consultants out there that do more harm than good. The formula companies are for-profit and love profit. There are no wonderful great options for most moms if they’re having trouble. The best option that they can hope for is a truly trusted and trustworthy known donor. In our culture where we’re so socially isolated as parents that’s hard to come by. I’m part of a huge network of thousands of mothers and I can count on a single hand the moms that I would trust to donate milk to my baby.  But milk banks that minimize risks are not the norm.

What I would like to see is some way to make milk bank testing available to mothers that are involved in milk sharing. A screening and education program for peer milk sharing. It’s unlikely to happen though, because the focus is on milk banks (which increase the cost) and on studies that purport to show the dangers of something that the study author doesn’t quite seem to understand.

I would also like to see studies of milk that mothers have received through a more typical donation process. Why not a study that obtains small samples of milk that a recipient has received from a batch that she intends to feed to her infant? That would paint a more accurate picture of peer milk sharing as it would test milk that was actually in the donation cycle as opposed to testing the milk of donors that might very well never have manged to donate since there is a “trust” factor involved that this study completely excluded.

THE MEDICAL COMMUNITY’S COMFORT WITH THE RISKS OF FORMULA

Formula has risks, especially when proper preparation guidelines aren’t followed.

What I would like to know is this: Would doctors be so quick to recommend supplementation if we used a system of unpaid human donors? Or would they be quicker to refer mom to lactation consultants to help her establish a breastfeeding relationship where she can provide her baby with her own milk?

Information exists that points to infant formula being a risky option when compared to a trusted and tested donor. Yet doctors are very comfortable suggesting that moms use it with their newborns, and they seldom provide information on reducing the risks.

Why don’t we hear more about that? What’s the fixation that everyone has on making breastmilk donation into something scary? We have accepted the risks of infant formula for decades and have made little effort to reduce them. Where are the studies on the microbial contamination of infant formula? Where are the studies on the the risks of formula use compared to a donor following proper hygeine practices? Where is the media hype over the dangers of improper mixing of infant formula?

WHY the focus on “breastmilk is a problem” to the point of a study that focuses on the rock bottom of what the milksharing community has to offer?

  13 comments for “How to Not Conduct a Study about Peer Breastmilk Sharing

  1. Katie
    October 22, 2013 at 8:19 am

    I donated to our brand new milk bank while I was still pumping and the screening process was (appropriately) strict. Blood tests, doctor’s notes… and the compensation was milk storage bags. And the knowledge that I was providing milk to NICU babies in need.

    http://Www.milkbankontario.ca

  2. Sarah
    October 22, 2013 at 10:29 am

    The article says “NO ONE asking for breastmilk to be shipped to them.. Is going to be okay with it being shipped without ice.” is misleading. It actually *is* appropriate to ship without any ice, and that’s what my HMBANA milk bank requires, because regular old ice will speed the thawing of the milk (not to mention make a mess of the cooler). BUT, milk is only shipped in large frozen quantities (like 200-300oz), where it fills the entire styrofoam cooler, the extra space is packed with newspaper, and it’s only shipped overnight. Once it arrives, it is placed immediately back into freezers, and the entire process takes less than 24 hours.

    • sarah
      October 22, 2013 at 11:56 am

      Oops. Yes.I meant that no one will ask a small quantity of milk to be shipped that way. (Which is why small quantities are not shipped- too pricey.)

  3. October 22, 2013 at 11:15 am

    Just excellent, so how do we garner support in the press for this balanced approach.

  4. October 22, 2013 at 1:13 pm

    YES. I was so frustrated by this article, and the attention it’s receiving. I was certified as a donor by Prolacta and during that time I also donated to six other moms that I met on Facebook. I met each one in person. Several of them came to my home. We had extensive conversations beforehand, and I offered my Prolacta certification with each one. I know a great deal about their babies, and they know about mine. I gave them milk straight from the deep freeze (-0 degrees) and they all had some way to keep it cold while transporting it home. I am still in touch with several of those moms, even though I don’t have more milk to share. I shipped milk to Prolacta using very strict protocols for keeping it safe, and I questioned them rigorously on those protocols to make sure the milk wouldn’t be wasted.

    The article seemed so far from real life as to be completely made up – and totally damaging to the milk sharing community.

  5. Krista
    October 22, 2013 at 1:45 pm

    Your post is spot on.

    I dontated a lot of milk after the birth of my last 3 children.

    I would have run in the other direction from the people conducting the “study”

    After all the time and effort I put into pumping and storing my milk I was very choosy about where it went.

    I needed to know age and information about Mom and Baby. I also needed for them to ask me appropriate questions about my diet and life style. If they are not asking that raises a big red flag.

    I also met in person with the Mom to whom I was donating.

    Breast milk is a lot of work to collect and it would break my heart to see it spoil in transit. These researchers were really scraping the bottom here.

    I sincerely hope this does not damage the lovely milk sharing communities.

  6. Em
    October 22, 2013 at 8:40 pm

    “Information exists that points to infant formula being a risky option when compared to a trusted and tested donor. ”

    Could you please provide more details about what information exists, as well as citations for that information? This statement is so vague, that it sounds a little like a scare tactic, and I’m not sure if that was your aim. What, exactly, are the risks? What is this information? Does it come from any valid sources (e.g. articles from peer-reviewed journals, especially from highly regarded or “top tier” journals)?

    • sarah
      October 23, 2013 at 9:26 am

      I don’t mean ‘formula is risky like driving 100mph down a highway on a motorcycle while texting’.

      Formula has risks (as does donor milk). The risks of powdered formula are related to the fact that it is not sterile and can often contain bacteria that can sometimes (rarely) cause illness. Doctors are familiar and comfortable with the risks. they are quick to recommend formula supplementation rather than attempting to resolve mom’s breastfeeding issues. There are risks but doctors don’t view formula as “risky”.

      A trusted donor that uses hygenic pumping practices and that washes her hands poses a lower risk, but doctors are uncomfortable with milk sharing and tend to lump all milk together and view it as contaminated body fluids rife with disease and illness.

      It’s not “formula is bad” risks, it’s that the medical community distrusts human milk unless it is processed and there is a tendency to unilaterally dismiss the possibility that responsible milk sharing can exist.

      I personally feel that a known trusted donor is a lower risk, followed by milk bank milk, followed by properly prepared formula.

      I would probably never use milk bank milk because its scarcity means that it needs to go to premature/sick infants.I can also count on a single hand the people that I would consider ‘known trusted donors'(and I’m lucky to have a list that long). Chances are pretty good that I would use formula if I needed to supplement.

      My issue is with how the medical community views milk sharing. They compare the low risks of infant formula to the risks of “all possible donors” rather than encouraging mothers to view the risks of formula to the risks of your best option for donation.

  7. Carly Grace
    October 23, 2013 at 11:31 am

    I appreciate your response. The news articles publishing this “news” have likely don lots of damage to the breastfeeding community at large.

    I didn’t realize before reading the abstract of the original journal article that the investigators of the study compared informally shared milk with unpasteurized milk donated to a milk bank. Interesting tidbit that the media did not share.

  8. Sylvia Onusic
    November 28, 2013 at 12:15 am

    You remarked that “the milk the researchers received was stored at -20 degrees C for up to two months before the sample was analyzed. In other words it would seem that some of the milk that had thawed was… refrozen.” Yes, this could very well be a possibility– but I didnt find the info about the store temp and period in the article. I must have missed it. Could you comment? Thanks.

    • sarah
      November 28, 2013 at 1:32 pm

      Sylvia, I purchased the study itself so that I could read the whole thing.The temperature that the milk was stored at wasn’t the issue, the issue was that they recieved milk that had thawed and then stored it for two months before analyzing it. If they re-froze the milk that goes against every breastmilk handling guideline out there.

      What they uncovered is that people need to handle breastmilk properly. This also applies to people using their own pumped breastmilk, people handling breastmilk while babysitting, etc. Methods of handling milk also extend to the preparation of infant formula and even to the ready made formula nurser bottles.

      • Sylvia Onusic
        November 28, 2013 at 5:53 pm

        Hi Sarah,

        Thanks for the clarification… I also purchased the study and was wondering on what page you found this info— as I said–I missed it. I am writing an article and want to properly cite this info…it is a very serious flaw on the researchers part– but why ? In a hurry to get their study done so they take only what was available?

      • Sylvia Onusic
        November 28, 2013 at 6:20 pm

        Thanks. I found the reference on page 1228.

        Thanks.

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