“Mothers deserve better”: An interview with Dr. Christie Del Castillo-Hegyi

Dr. Christie Del Castillo-Hegyi, MD, is a mother – and a physician- on a mission. Since she began her blog and Facebook page a few months ago, she’s become a hero to over 10,000 parents who have experienced insufficient milk or delayed lactogenesis II (the process of breastmilk “coming in” after birth). She has been tirelessly advocating for better safeguards for breastfeeding mothers, and fighting against the dogma that insists that supplementation is detrimental to a baby’s health. 

I’m honored to bring you this interview with Dr. Del Castillo-Hegyi. Her opinions are controversial, and I really admire her bravery, and how she’s turned a negative personal experience into a plea for change. Before we make blanket recommendations that force women to weigh their gut instinct against the fear of recriminations from medical professionals and hospital staff, it’s essential that we look at ALL the research- without bias, without blinders, without fear. 

– The FFF

“Mothers Deserve Better”:

An Interview with Christie Del Castillo-Hegyi, MD.

FFF: Your blog and Facebook page are called “Insufficient Breastfeeding Dangers”. What are the dangers of insufficient feeding in a newborn, exactly?

CDCH: The known potential effects of insufficient feeding are dehydration, low glucose, elevated bilirubin (jaundice) and high sodium.  All in all, those laboratory markers make up the syndrome of starvation.  Dehydration, if extreme enough, can cause decreased circulating blood volume, low blood pressure, and decreased circulation to the brain.  This can cause brain injury and even death.  In animal studies, thirty minutes of loss of circulation to the brain can cause widespread brain cell death.

 

Extreme dehydration results in hypernatremia, or high sodium, because as a baby loses water, the sodium will become concentrated.  Their brains can experience contraction similar to dehydrated fruit, which upon re-expansion through rehydration, can result in brain swelling and irreversible brain injury.  It has been documented in the literature that hypernatremic dehydration can result in brain swelling, brain hemorrhage, seizures and even death.

 

It is not clear how long a child can tolerate exclusive colostrum-feeding before they develop hypoglycemia.  I have had one mother whose child seemed dissatisfied from exclusive colostrum-feeding for only one day and was found hypoglycemic by the second day.  It is difficult to know what the typical time to developing hypoglycemia of an average exclusively breastfeeding child because glucose is not routinely checked in babies without a diabetic mother or other traditional risk factors.  Hypoglycemia eventually happens to all babies if they do not receive enough milk through breastfeeding either due to poor supply or poor latch.  EVERY article in the known medical literature that has studied newborn hypoglycemia shows evidence of harm in the form of abnormal MRI findings and decreased long-term cognitive outcomes.  A low glucose is typically cited as a glucose level of less than 45, even though some newborns may exhibit few signs of distress even at this level.  Signs of a hypoglycemic newborn is agitation, frantic feeding, inconsolable crying or lethargy.

 

Lastly, insufficient feeding can result in a third dangerous condition, called hyperbilirubinemia or jaundice.  A bilirubin of greater than 15 is considered abnormal in the literature and has been associated in multiple studies around the world with a higher risk of autism relative to newborns who don’t experience high bilirubin levels.  One study refuted these findings and it came from the Kaiser system, which is a Baby-Friendly hospital, where exclusive breastfeeding from birth is encouraged.  They produced a study that was well-done but was thousands-fold smaller in size that the largest study, which showed a positive correlation, in Denmark, where they studied the ENTIRE newborn population over 10 years, which included over 700,000 newborns.  The Denmark study found a 67% higher risk of autism in jaundiced newborns.

 

That being said, I don’t want to worry every mom whose child had jaundice.  Not every jaundiced newborn has a level above 15.  Also, not every child who develops a level above 15 will develop autism.  Autism is still a genetic disease.  I believe babies who are born with a lot of autism genetics, as predicted by having lots of scientists, mathematicians and engineers in their families, who experience a physiologic insult, such as lack of oxygen to the brain and jaundice (both demonstrated in the literature to be associated with autism) may go on to have the disabling condition of autistic spectrum disorder.

FFF: What sparked your interest in this issue?

CDCH: My newborn son developed hypernatremic jaundice and dehydration because I was assured by the breastfeeding manuals that there is always enough milk in the breast as long as I keep breastfeeding.  I was told that, “he would be hungry” and that my “latch was perfect” by our lactation consultant the day we left the hospital.  No one ever told me it was possible for a child to become dehydrated and unconscious because there was not enough milk present.  We were told to count the diapers but how wet is a wet diaper?

 

My son lost 15% by the third day, the day after discharge and my pediatrician must not have calculated the percent lost because he gave us the option of continuing to breastfeed and to wait for the 4th or 5th day.  I realized when I was watching my son get an IV that what I did must be common and that other mothers must be experiencing this horror too.  I thought, “What must my son’s brain injury look like and why hadn’t I heard of this before?”  Three-and-a-half years later, I found out what his brain injury looked like.

 

What I saw with my own physician- and mother-eyes was the slow torture of a newborn child.  Babies who are asked to endure hours of frantic feeding without compensation of milk, otherwise known as “cluster feeding,” are experiencing agony.  No textbook, lactation consultant or physician will ever convince me otherwise.  To this day, the description of what I saw is embedded in every breastfeeding manual as normal and vital for the stimulation of milk production.  We are systematically telling new mothers to ignore their child’s hunger cues by telling them there is ALWAYS enough colostrum and by scaring them into withholding formula even when a newborn needs it.  THAT is why newborn dehydration will never go away with simply increasing breastfeeding support and follow-up appointments.  Unless a mother is given the knowledge about the potential harms of insufficient feeding and the right to feed her own baby, newborns will continue to experience these complications and be hospitalized for it every day.

FFF: When you began researching the topic, was there anything that surprised or shocked you?quotescover-JPG-66

CDCH: I began researching the topic shortly after receiving our son’s formal diagnosis of autism, which was February, 2014.  I first studied jaundice and autism and was surprised that there were so many studies that linked the two conditions, because I had never heard of the risk factor listed in the patient literature on autism.  I wondered why a modifiable risk factor would not be heavily attacked in the face of an epidemic.  I believe it is because it is linked to breastfeeding.

Breastfeeding has enjoyed an untouchable status in the medical community.  So much so that no part of it as outlined by the lactation community has been challenged by the physician community.  We assumed because it is associated with breastfeeding, what ever the guidelines are must be safe, despite evidence that many newborns on a daily basis get admitted for dehydration and jaundice from exclusive breastfeeding.  Unfortunately, any challenge is quickly met with an accusation that the individual is “anti-breastfeeding” or “pro-formula,” when in fact, perhaps it may simply be a challenge like mine, whose purpose is to keep the newborn safe from harm.  I am surprised by the lack of activism by the medical community to reduce or stop the incidence of a horrible, life-threatening and brain-threatening condition that can be prevented with informing mothers of these complications and a few bottles of formula to keep a child out of the hospital.

quotescover-JPG-42I was surprised to find out that we really haven’t exclusively breastfed from birth for millennia before the creation of formula.  If that were so, indigenous cultures that have no access to formula currently would be doing so nearly 100% of the time.  In fact, there is no evidence that we have widely exclusively breastfed from a single mother at all.  According to a review of the history of breastfeeding written by an IBCLC, lactation failure was first described in Egypt in 1550 B.C.  Wet nurses were often employed to feed newborns whose mother could not lactate.  There are modern day cultures where babies are breastfed by a community of mothers, not just one mother.  Also, the breastfeeding literature is rife with articles showing how problematically low exclusive breastfeeding from birth is all around the world because most cultures give what they call, “pre-lacteal feeds.”  These moms probably just call it “feeding.”  Moms all over the world recognize that their children may need more than what is coming out of the breast and they have populated their countries on the tenets of feeding their children what they need every day.  It wasn’t until the breastfeeding resurgence in the 1980’s and the codification of exclusive breastfeeding from birth through the Baby-Friendly Hospital Initiative of the World Health Organization written in 1992, that we started feeding newborns colostrum-only during the first days of life in the hospital.  This was written primarily to counteract the dangerous feeding of formula prepared with contaminated water to babies in the developing world, which was an important public health endeavor.  However, the guidelines to exclusively breastfeed for 6 months largely ignored the common possibility of insufficient milk production experienced by many mothers.  So feeding newborns without supplementation only began in the 1990’s.

Nurses who worked in the newborn nursery in the 1980’s account that newborns were supplemented from the first day of life with 2 ounces of formula.  Most newborns tolerated these feeds and did not vomit it as widely claimed by the lactation community.  I found that the newborn stomach at birth is not 5 cc, as claimed by the lactation community.  It is in fact roughly 20 cc’s or 2/3rds an ounce, as summarized by a review of 6 different articles looking at actual newborns.  This is also the static volume of a newborn stomach and may not account for peristalsis, which may allow a newborn to accommodate more.  I discovered that it is quite implausible that the stomach can grow 10 times its size in 2 days and that a one-day-old newborns can in fact drink 2 ounces in one meal without vomiting at all.

Many moms asked me, “How much weight CAN they lose?” and “What DOES my newborn need?”  I looked again to the literature looking for evidence showing the safety of weight loss in newborns and NOT A SINGLE ARTICLE showing that 10% weight loss over 10 days is safe in every newborn, which is the current standard of care.  This teaching has been accepted for decades now.  To answer the second question, I sought out what a one-day-old’s daily caloric requirement was and what the caloric content of colostrum is.  I found that a one-day-old’s caloric requirement is the same as that of a three-day-old’s, because they have the same organs and same activity all three days.  A one-day-old newborn needs 110 kcal/kg/day and colostrum has 60 kcal/100 mL.  I must have done this calculation by hand 20 times because I found that this resulted in a one-day-old needing 2.8 ounces of colostrum per pound per day .  A 7 lb child would need 19.6 oz of milk in one day.  I confirmed this finding because I gave my 5.5 lb twin girls free access to supplementation and they each took 2 oz every 3 hours on their first day, a total of 16 oz.  They only gained 1 oz! That leaves 15 oz going completely toward their metabolic activity.  For them, they required 2.7 oz/lb/day.

How much actual science and observation of actual babies and safety data was done to come up with the breastfeeding guidelines?  There are many articles that show that unlimited supplementation can reduce breastfeeding duration, which is why formula is withheld from babies, but none that showed this practice was safe for the baby’s brain in the long run.  We have no idea what threshold of weight loss is in fact safe for a baby’s brain, because it has not been studied.  While babies’ bodies can endure days of underfeeding, their brains cannot.  That is what I am asking the scientific community to study.

FFF: Do you think that medical professionals are afraid to say anything that could be construed as “anti-breastfeeding”? How have your peers responded to your work in this area?

CDCH: Yes, medical professionals are afraid to say anything contrary to what the lactation community accepts as true because they do not want to be perceived as “anti-breastfeeding” or “pro-formula.”  Being “pro-formula” or “formula-sponsored” is a common accusation that I receive despite all the “pro-breastfeeding” instruction that I provide.  People have assumed that if you are against any part of the breastfeeding prescription, you MUST be against breastfeeding.

I am absolutely pro-breastfeeding.  I am absolutely AGAINST starving a child to achieve it.  I have received quiet support from several of my peers, but mostly silence for the majority.  I believe colleagues who are silent are incredulous or shocked or afraid.  I can’t truly know.  I can understand it because I am a physician and we are taught to stick close to the pack.  I am literally running away from it.

Until there is data from a credible and impartial source like the CDC or the Joint Commission, I will not have the proof that the Baby-Friendly Hospital Initiative is causing long-lasting harm.  There is already plenty of harm that has resulted locked in the hearts of many mothers who experienced this trauma.  I hope moms from both our Facebook sites will be willing to help advocate for increased safety for newborns by submitting written and/or video testimony on how the BFHI harmed them and their child.

FFF: What sort of response have you received from publishing your blog and Facebook page? 

CDCH: Outrage from breastfeeding moms and opposition from most lactation consultants except for a loved few, two of which fully recognize the harms of insufficient feeding to baby’s and their moms.  However, the ones I live for are the responses from moms who say that this happened to them and their babies either were harmed, hospitalized or were luckily saved from harm by an independently minded mom, nurse or other individual that told them their baby was hungry and needed a bottle.  These moms write to thank me for validating what happened to them and for telling them that this was not their fault, that what they saw was real and that this should never happen to any mother and child.  I have received messages from moms experiencing what I describe in my letter in real time and I have helped those moms advocate for their child, even when their professionals were bullying them to keep withholding formula!  It’s crazy.  What are we doing to our newborns?

What I feel most disappointed about is the lack of response I have received from the Executive Committee of American Academy of Pediatrics who I have been trying to contact for at least 6 months.  No response from the organization that is supposed to protect our newborns.  So I decided to inform the public on my own.  At first I was afraid.  Now I am not.

FFF: Have you endured any personal or professional attacks due to asking these tough questions about our current protocol for early breastfeeding?

CDCH: Tons.  People on the internet can act with cruelty because they don’t have to suffer any consequences.  I try not to let it get to me because I know it comes from a place that is likely sincere like mine, a mother trying to protect her newborn from harm.  Some mothers perceive my ideas as harmful, likely because the thought of starving your child is so horrible, I get the most harsh messages from breastfeeding moms, often moms whose children developed pathological weight loss.  I haven’t received too many challenges from physicians though, interestingly enough.  At least among my colleagues on Facebook, I have received supportive messages.

FFF: In an ideal world, how do you think hospitals could alter their procedures to better protect babies and mothers from the dangers of insufficient breastfeeding?

CDCH: These are my core recommendations:

1) Instructional videos on manual expression to check for the presence of colostrum.  Mom should also be instructed on listening for swallows to detect transfer of milk.

 

2) Pre- and post-breastfeeding weights to ensure transfer of milk and identify newborns at risk for underfeeding.

 

3) Calculation of the 7% weight loss threshold at delivery so that a mother knows when supplementation may be needed, which can be posted in her room.  The most critical clinical data an exclusively breastfeeding mom needs to know is the percent weight loss of her child.

 

4) Universal informed consent and thorough counseling on the possibility of underfeeding and jaundice due to delayed or failed lactogenesis and giving mothers permission to supplement their child if they go under the weight limit at home using a baby scale. Mothers must know the signs of a newborn in distress including hours of feeding continuously, crying after unlatching, and not sleeping. Most of all, a mother should be advised to check her supply by hand-expression or pumping to ensure that her child is in fact getting fed.  If little milk is present, she should be given permission ahead of time to supplement by syringe with next-day follow-up with a pediatrician and lactation consultant to assess the effectiveness of technique and transfer of milk if such an event arises.

5) Uniform daily bilirubin (abnormal total bilirubin > 14) and glucose checks (abnormal glucose < 45) for exclusively breastfed infants who are losing weight or who have any degree of jaundice.  Both these values are critical to detect physiology that can cause brain injury.

6) Twice daily weight checks in the hospital and at home until lactogenesis and consistent milk transfer has been established with a mother-baby dyad.  These can be plotted before discharge to predict the expected weight loss the day after discharge if mother’s milk does not come in.  A mother can check the weight at home and supplement if the child reaches the weight loss threshold.

7) Detailed instructions on supplementation only after nursing to continue the stimulation needed for milk production.  Supplementation should be a choice and be accepted and supported by the medical community as a patient right.  A mother has the right to feed her child above all goals the medical community has for her.

8) A breastfeeding safety checklist to reduce medical error in the care of a mother and exclusively breastfed newborn.

 

Lastly, my advice for new mothers at home is to have an experienced parent around for the first week to help.  Parents need sleep and they don’t get much in the postpartum period.  Additionally, experienced parents know the look and sound of a child who is hungry or in distress.  The child’s wishes should be honored.  I believe in the human rights of a newborn to be fed what they need because following the alternative can lead to what my son experienced.

FFF: Your page grows in popularity every day. Have you been surprised at how many mothers have been affected by this issue?

CDCH: I am not surprised by how many mothers have experienced this issue.  Mothers have been experiencing this for 2 decades now since exclusive breastfeeding from birth has been the mandate.  This is the first that the experience is being made public because mothers have been uniformly shamed for having their child go through this.

Even now, people still post comments that blame me for not knowing, for not producing enough milk, for not seeking out enough help when the entire teaching by the lactation community prevents a mother from knowing this is possible and the standard of care does not detect what is coming out of a mother’s breast.  We have been taught to abandon responding to a baby’s cry in order to achieve exclusive breastfeeding and rely instead on weight checks and bilirubin levels to determine “medical necessity” for supplementation.

What are we doing with our newborns?  What are we doing to our mothers?  It breaks my heart every day the things mothers have told me about inadvertently starving their newborns.  They all sought help and all followed the instruction of their providers while seeing that there was something wrong with their child.  But they were told breastfeeding is always enough as long as your child is producing diapers.  What we are doing is NOT enough. These are the most well-intentioned and motivated mothers who do this. They read parenting books, attend classes and follow their doctor’s orders like I did.  I was in the hospital for a whole 48 hours while my son was receiving nothing for me!  Then I was at my pediatrician’s office the next day, at a lactation consultant’s office the day after and in the hospital by that evening.

Mothers are being led astray by the current breastfeeding dogma and being led to hospitalize their precious babies.  These mothers deserve better.

Vist Dr. Del Castillo-Hegyi’s Facebook page for more information: https://www.facebook.com/insufficientbreastfeedingdangers?fref=ts

 

 

City of Ottawa Public Health Unit’s “Informed Consent” webpage: A case study in (un)informed consent

An anonymous FFF reader has allowed me to publish the following letter, which she sent to her local Public Health unit in Ottawa. I visited the site that caused her so much consternation, and I was equally incensed. Please click here to see what she and I are talking about:

Make an informed decision about feeding your baby

My thoughts on the Ottawa website follow this letter. I’d also encourage you to check out the letter sent by the blogger at Awaiting Juno. And, if you’re feeling inspired to do so and happen to be a citizen of Ottawa (or even if you just feel like giving them your opinion), feel free to write your own letter and send it to healthsante@ottawa.ca.

***

Dear City of Ottawa Public Health Unit,

I discovered the following webpage on Informed Consent and was utterly dismayed at what I had read.

I had my daughter seven years ago and am hoping to have another child within the next two years. When I was pregnant with her I knew I was going to breastfeed her. I felt that formula was vastly inferior. Unfortunately having breast hypoplasia (something that none of the literature of had prepared me for), made exclusive breastfeeding an impossibility. My daughter went from losing weight on my breasts alone (I did have a postpartum nurse who was very concerned about my breasts due to their shape and spacing, but I dismissed it as an unsupportive nurse, not as her giving me relevant information on my situation), to thriving on formula.

That page isn’t giving informed consent, it is scaring women into breastfeeding by bringing up scary words like “obesity”, “SIDS” and “Cancer”, without mentioning any potential  drawbacks for breastfeeding (including not being able to take certain medication and that it can be a physically and emotionally draining experience for some) and without making any positives about formula. It also doesn’t mention that formula prepared properly is a valid feeding method and choosing it doesn’t mean that a child will end up toothless, obese, diagnosed with cancer, or dead. From what I have seen about the research the main risks are a higher rate of gastrointestinal viruses and ear infections (which my daughter did get, when she was 5 and a half years old). For a woman who might be already sad that breastfeeding isn’t working out with them, such phrasing of information without perspective or actual risk amounts could contribute to postpartum depression. I should know- seeing that kind of information online (it exists all over the internet) after switching to formula was a contributing factor to my own depression.

You mention on the first page that the Baby Friendly designation includes supporting women’s feeding choices, but I do not see how that supports a formula feeding woman at all and could increase the stigma and isolation about using a product that is in fact very safe to use in our city.

I encourage you to take that “Informed Consent” page down and rework it so that it does not demonize formula. The benefits of breastfeeding in all honestly should be able to stand on its own without resorting to demonizing formula. Furthermore, I am more than willing to help with any rewording to help formula feeding moms feel more supported in their choice.

As a taxpayer, mother and a woman who felt intense guilt for 2 years for using a product that nourished my daughter where I couldn’t (I also have the perspective that she is a very healthy, active 7 year old), I urge you to reconsider your approach.

Yours truly,

A.

 ***

Before I return to my Pad See-Ew, which is currently getting cold (yet another reason to be annoyed at the city of Ottawa – they are ruining my damn dinner), I want to add a few of my own thoughts to Anonymous’s letter.

The document on the Ottawa Dept. of Health website is coercive and factually inaccurate, starting with the first sentence. They state:

Deciding how you are going to feed your baby is one of the most important decisions you will make as a parent.

What the “most important decisions” you’ll make as a parent are is entirely subjective.

Next, they state:

Making an informed decision means you have all of the information you need to help you decide what is best for your family.

Yep. Exactly. You deserve accurate, dispassionate information so that YOU can decide what is best for YOUR family. This document does the polar opposite. It confuses correlation and causation (I only see two uses of the important qualifier “may” in the lists of benefits and risks – for example, they claim that breastfeeding “helps to protect against cancer of the breast and ovary.” It would be accurate to say that breastfeeding “may help to protect…” or “has been associated with a lower risk of…”, but the way they pronounce this benefit makes it sound proven without a doubt. This is simply not true); it does not mention any of the potential downsides of breastfeeding, nor the benefits of formula feeding (even if they’d just said “the ability to feed your child when breastfeeding isn’t working or there isn’t a mom in the picture”, it would have sufficed); and most importantly, it does not leave the reader with any choice other than to breastfeed, or feel like an inadequate, terrible human being. And before someone starts misquoting Eleanor Roosevelt to me, let me stop you: yes, people CAN make you feel guilty without your consent. Or if you can’t agree with me on that, let’s forget about guilt – how about embarrassed or judged? Can people make you feel that way without your consent? And what if you’re not in any emotional place to give that consent? Like when you are a hormonal pregnant or newly postpartum parent, and it’s your city government posting a bunch of fear-inducing drivel under the headline “the benefits or breastfeeding for the baby, mother, family and the community”? How about then?

The document’s piece de resistance is this half-assed suggestion at the bottom of the page:

If you have made the informed decision to formula feed and need information on how to prepare it safely, please visit Ottawa Public Health’s Food safety page.

Ah, I see. So if you’ve made a decision to do something that causes nothing but inconvenience, pain, and suffering for you and your child (and your community- can’t forfet your community!) based on this “information”, you should just go to a different department, because we’re freaking OVER you. Notice that when the link for more information on breastfeeding follows this taxonomy:

Residents>>Public health>>Pregnancy and babies>>Healthy baby and parenting>>Feeding your baby>>Breastfeeding

There is NOTHING about formula in this “Feeding your baby” section. Instead, formula feeding monsters, er, mothers are directed to:

Residents>>Public health>>Food safety and inspections>>Baby Formula

Apparently, healthy babies and parenting only has to do with breastfeeding. Formula feeding is on par with selling hot dogs at softball games.

I don’t even know what to say, except to all the soon-to-be moms and currently formula-feeding or combo-feeding mothers in Ottawa, I am so, so sorry. Your city health department sucks donkey balls. And if I were you, I’d start the angry tweets and emails right. Freaking. NOW.

Twitter: @ottawacity

Email: healthsante@ottawa.ca

 

 

Is donor milk dangerous? Not as dangerous as hypocrisy.

Those of you who have been reading this blog long enough are probably well aware that I hate hypocrisy. I mean, I hate it. I hate it in politics, I hate it in religion, I hate it in the spats I have with Fearless Husband, and of course, I hate it in the breastfeeding/formula feeding debate.

But most of all, I hate it in myself.

That’s why I’m sitting here agonizing over how to report on a study that hit the news cycle tonight. According to NBC News,

…a new study finds that human milk bought and sold on the Internet may be contaminated — and dangerous…Nearly 75 percent of breast milk bought through the site OnlyTheBreast.com was tainted with high levels of disease-causing bacteria, including germs found in human waste…That’s according to Sarah A. Keim, a researcher at Nationwide Children’s Hospital in Columbus, Ohio, where her team purchased more than 100 samples of human milk last year, compared them to unpasteurized samples donated to a milk bank and then tested them for safety…what the researchers found was worrisome: more colonies of Gram-negative bacteria including coliform, staphylococcus and streptococcus bacteria in the milk purchased online, and, in about 20 percent of samples, cytomegalovirus, or CMV, which can cause serious illness in premature or sick babies. The contamination was associated with poor milk collection, storage or shipping practices, the analysis showed.

Here’s the problem: I look at articles which report on the dangers of formula with an intensely critical eye. It would be horrendously hypocritical for me not to do the same in this case – and I’m especially worried, because the people purchasing donor milk are in the same boat as many FFFs – people who wanted to breastfeed and couldn’t. I don’t want to turn my back on my audience and be a hypocrite in one fell swoop.

And yet.

Obtaining milk online is a new construct. We do not have several generations of humans raised on donor milk to examine and rely on for (admittedly insufficient, but oddly comforting) anecdata. We can’t define “donor milk” as clearly as we define commercial formula, because it isn’t a static product. Formula does not change based on a baby’s needs and age, or based on the diet or environment of the woman producing it; breastmilk does. There is not the issue of online, anonymous dealings when we discuss formula (well, unless you count the 16 cans of Alimentum my husband purchased on Ebay…I know, I know, but it was sealed. And that shit’s expensive if you buy it retail).

Discussing donor milk and the safety thereof is not the same as discussing formula, because there are so many more issues at play. This study is not about whether donor milk can nourish an infant better than formula can. This is about the biology of a live substance, and what happens to that substance once it leaves one person’s body and is transported to another’s. This is about body politics, and e-commerce. It is so much more complex than breast versus bottle.

So I hope I’m not being hypocritical when I look favorably at this study, because I do think it’s one worth taking seriously, as long as we acknowledge the limitations. Let’s review those, first:

1. It was a singular study. ONE study. Which used donor milk from one specific organization.

2. As the study is not yet available online, there’s still a lot we don’t know. NBC reports, “Of the 101 samples analyzed, 72 were contaminated with bacteria and would not have met criteria for feeding without pasteurization set by the Human Milk Banking Association of North America, or HMBANA.” I’m not sure how these criteria are set by HMBANA, and I don’t know exactly what the dangers of these bacteria are.

3. We don’t know that any of the babies who would have received this milk would necessarily have gotten sick. (This is one of the things we discuss with formula feeding studies, remember? For example, many people worry about the GMOs in formula. And yeah, most formulas contain ingredients derived from genetically modified corn, soy, and other foodstuffs.  But we have no evidence that babies fed these formulas suffer any ill effects from these tiny amounts of GMOs.)

Now, let’s talk about why this study is a little different than most of the breastmilk vs. formula studies we encounter.

1. The results were in vitro – aka, found in a lab. These were not observational or self-reported or marred by recollection bias. These were findings that were discovered from looking at samples under a microscope, in a controlled environment.

2. We do know that some of these bacteria are dangerous to babies.  20 % of the collected donor milk samples contained cytomegalovirus, which according to NBC “can cause serious illness in premature or sick babies.” 20% is a substantial amount.  The article didn’t give numbers for the samples which contained other disease-causing bacteria like coliform and staphylococcus, nor do we know if the amount of bacteria was sufficient to cause illness. (Please note: I think we do need to approach this with caution until we see more information, because there’s a chance the amount of bacteria wasn’t clinically significant.)

3. A large part of my ennui with formula studies is that most tell us the same thing: breastfeeding mothers are associated with healthier children. There’s not much variance in the theme of the research, or what can be done about it. This study is nothing like that. It is giving us actual information about the actual risk of bacterial contamination through donor milk. This is exactly why I started taking formula preparation rules so seriously when I saw in vitro studies on bacteria found in infant formula. It’s hard to argue with cold, hard science that has removed the human condition from the equation.

More importantly, this study offers us an opportunity. Not only does it allow us to improve milk sharing – something that can and should be a choice for moms who cannot or choose not to breastfeed – it reminds us that cold, hard science can be translated into better feeding options for families. Donor milk can and should be tested, to see how it needs to be stored and transported and screened. Formula can be compared with donor milk so that parents can understand the risks and benefits to both scenarios. Since one of the advantages of breastmilk is its ever-changing, adaptive personality, we could look at how the donor milk from a mom nursing a toddler might affect a newborn. We could even see if, say, the milk from women with higher IQs equates to higher IQs in babies fed their donor milk (oy, can you imagine the eugenic excitement over a finding like that? ::shudder::). You see where I’m going with this. When we’re discussing the substance rather than the behavior, a whole world of research will open up – research that can ultimately lead to improved formula, improved donor milk, and improved options for both babies and parents.

Lastly, it seems that defensiveness about negative press for one’s feeding choice is not exclusive to formula feeders. NBC quotes one milk sharing network’s founder as accusing the research of being “A blatant attack on women attempting to feed their babies”:

“..(It) is cruel and you should feel ashamed of yourself for spreading misinformation,” Khadijah Cisse, a midwife who founded MilkShare, a portal for connecting women cited in the new research, said in an email to NBC News. “Anyone can type up any bit of lies they want and make claims. Breast milk is supposed to contain bacteria.”

I feel bad for Cisse, as I know what it feels like to read research that denies my own lived experiences, or makes me feel judged for feeding my child in a specific manner. In her defense (and mine), it’s really hard to keep a lid on one’s anger when the media takes a 5k story and runs a marathon with it, without any consideration for context or nuance.

Imagine how much easier it would be to keep that proverbial lid tightly locked, if feeding choices were supported and respected. If the dialogue didn’t always involve universal bests. If we could make choices armed with more cold, hard science so that the choices themselves didn’t have to so damn cold and hard.

There’s a lot we could learn from this study.

Or, you know. It could die in an avalanche of hypocrisy.

 

 

 

 

 

 

The biggest problem with the breastfeeding discourse has nothing to do with breastfeeding

Sometimes, a cigar is just a cigar. And sometimes, it’s not.

As any journalist, blogger, or parenting-forum moderator can attest, merely mentioning the words “breastfeeding” or “formula feeding” will create controversy – or at least a comment thread that derails within the first three posts. It’s virtually impossible for someone not to feel offended. It happens on both sides of the debate; some breastfeeding advocates see red anytime a person writes favorably about formula, while some formula feeding mothers are guilty of taking it all too personally, and assuming that every positive aspect of breastfeeding is dig at their lack of lactation.

This bugs me, being someone who writes about this topic regularly, because it dilutes the conversation. We lose track of what we’re talking about, and lose the chance to understand, to evolve, to connect.

Of course, this problem is endemic to any hot-button parenting issue. Circumcision, sleep training, working vs. staying at home, vaccinations… But when it comes to breastfeeding, what I’m talking about goes far beyond the mommy war bullshit. We’ve apparently lost the ability to discuss anything to do with breastfeeding and formula without heaping layers of preconceived notions, philosophical ideals, and emotional reactions onto whatever’s being discussed. Even if the conversation takes place in a respected medical journal, the halls of a hospital, or a human rights nonprofit.

With that said, I want to make something clear: this post is not about breastfeeding. It is not about the benefits of breastfeeding. It is not about a woman’s right to breastfeed or formula feed. It is not about you, or me, or your sister-in-law. It’s about language, interpretation, and bias. If it helps, substitute the word “breastfeeding” for something less emotionally loaded. “Drinking coffee”. “Wearing palazzo pants.” Whatever.

In the past month, two stories popped up, buried so deep in the news that only someone who obsessively googles terms like “infant feeding” and “lactation” would have seen them. They were about studies showing negative associations with breastfeeding (see? Didn’t your heart start beating a bit faster? …Negative associations with palazzo pants. That’s better, right?) The first one found that longer durations of breastfeeding (past 12 months) were associated with higher rates of a specific form of breast cancer in Mexican and Mexican-American women. The evidence was based on subject recall of breastfeeding history, in a specific population. All I will say about the study itself is that it is one, isolated result; more research must be done before anyone can make proclamations about whether women of Mexican descent might want to wean after a year.

Which is basically what I say about every infant feeding study. These results do not prove a causal relationship. It would be patently false and extremely irresponsible to have headlines screeching “breastfeeding causes breast cancer!”

Luckily, there were no such headlines. The story didn’t receive much coverage in major news outlets, but here were the headlines I did find:

Breastfeeding May Increase Cancer Risk for Mexican-American Moms (http://www.nbcsandiego.com/news/health/Breastfeeding–Cancer-Rules-May-Not-Apply-to-Some-226050001.html)

Lactation may be linked to aggressive cancer in Mexican women

http://health.ucsd.edu/news/releases/Pages/2013-10-01-lactation-linked-to-cancer-in-Mexican-women.aspx

Women of Mexican descent more likely to be diagnosed with aggressive form of breast cancer http://www.news-medical.net/news/20131002/Women-of-Mexican-descent-more-likely-to-be-diagnosed-with-aggressive-form-of-breast-cancer.aspx

Mexican Women’s Breast Cancer Risk Tied to Breast-Feeding? http://healthcare.utah.edu/womenshealth/healthlibrary/doc.php?type=6&id=680757

Notice all the qualifiers. May be linked. More likely. And my favorite example, the question mark at the end of the last headline.

Now, let’s compare these measured, accurate headlines with those that stemmed from similar studies (self-reported data, specific populations, single studies rather than meta-analyses) that showed a positive effect of breastfeeding:

Breastfeeding reduces cancer risk http://www.dailymail.co.uk/news/article-88785/Breast-feeding-reduces-cancer-risk.html

Breastfeeding Cuts Breast Cancer Risk http://www.webmd.com/breast-cancer/news/20070417/breastfeeding-cuts-breast-cancer-risk

Study: Breastfeeding Decreases Cancer Risk http://www.npr.org/templates/story/story.php?storyId=9656285

Breastfeeding Protects Against Breast Cancer http://www.reuters.com/article/2009/08/10/us-breastfeeding-cancer-idUSTRE5795CZ20090810

Not one qualifier to be found.

But FFF, you’re arguing semantics, you say. Perhaps. But how can we argue that subliminal messages that come through the advertising of formula or bottles can so greatly affect a woman’s breastfeeding intention, and then argue that the language used in widely-read headlines doesn’t make an impact?

Not convinced? Let’s go beyond the headlines. The one quote from the lead researcher of the breastfeeding/cancer in Mexican women study used in the media was this:

“Our results are both puzzling and disconcerting because we do not want to give the wrong message about breastfeeding…If you treat breast cancer as one disease, breastfeeding is beneficial to both mother and baby. That should not be dismissed.”

Puzzling? Disconcerting? Science needs to be free of bias. It’s perfectly acceptable to be “surprised” by findings, but “disconcerted”? And as for the point about “breast cancer as one disease“, this is not the sentiment expressed in the quotes from articles reporting a positive effect, many of which proudly extrapolate their specific findings and make sweeping statements about breastfeeding promotion:

Clearly, the researchers conclude, breastfeeding is associated with “multiple health benefits” for both mother and child…”That’s why we need supportive hospital policies, paid maternity leave, and workplace accommodations so that women can meet their breastfeeding goals…” (source: Reuters)

The same double standard popped up a few weeks later, when a study hit the news which found that babies breastfed longer than one year, as well as babies introduced to gluten after 6 months, had an increased risk for celiac disease. Again, hardly any media coverage; the one major outlet (Yahoo News) that covered it used the headline “Parent’s Feeding Choices May Raise Baby’s Risk for Celiac Disease“. Absolutely accurate headline, but no mention of breastfeeding. Granted, there were two findings that came from this study; both of which did involve a feeding “choice”. What I find interesting, though, is that whenever formula is associated with something negative – even if that particular finding is buried in a mess of other data – the headlines make sure to mention it. (Remember the arsenic-in-baby-formula scare of 2012?)

This study had many flaws. (Science of Mom has a great explanation of what these were over on her blog, if you’re interested.) But it didn’t have more flaws than 99% of the formula-is-risky studies which we are subjected to on a weekly basis, none of which are handled with the same degree of intelligence and moderation.

In Bottled Up, I discuss the problem of publication bias, and the professional death knell it is to report or support anything that detracts from the supreme perfection of breastfeeding. This is a bigger problem than one might believe – because if the end goal is to find ways to reduce disease and increase health in populations, we should be striving for information, not propaganda. And this is why I fight so hard to reframe how we discuss and promote breastfeeding – because if we are basing all of our support for the practice on science, then we run the risk of bastardizing – or at least “tweaking” – that science to justify our promotion.

Sometimes, a cigar is just a cigar. But when it comes to infant feeding science, the results are never just the results.

Bad medicine: Why the AAP’s new statement on breastfeeding & medication is puzzling

“The benefits of breastfeeding outweigh the risk of exposure to most therapeutic agents via human milk. Although most drugs and therapeutic agents do not pose a risk to the mother or nursing infant, careful consideration of the in- dividual risk/benefit ratio is necessary for certain agents, particularly those that are concentrated in human milk or result in exposures in the infant that may be clinically significant on the basis of relative infant dose or detect- able serum concentrations. Caution is also advised for drugs and agents with unproven benefits, with long half-lives that may lead to drug accumulation, or with known toxicity to the mother or infant. In addition, specific infants may be more vulnerable to adverse events because of immature organ function (eg, preterm infants or neonates) or underlying medical conditions.”

 

– Source: The Transfer of Drugs and Therapeutics Into Human Breast Milk: An Update on Selected Topics Hari Cheryl Sachs and COMMITTEE ON DRUGS. Pediatrics; originally published online August 26, 2013; DOI: 10.1542/peds.2013-1985

The preceding is the conclusion to a new report released by the American Academy of Pediatrics, which has given birth to a number of ecstatic headlines – “Most medications safe for breastfeeding moms”. “Medications of nursing mothers do not harm babies”. “Top Pediatrician’s Group Assures Most Drugs Safe While Breastfeeding”. Reading these, one might assume that a plethora of new research had been released, provoking the AAP to make a blanket statement about risk and benefits.

One should read the actual report before one gets too excited.

Other than the introduction and conclusion, which basically explain that studies are limited on most medications and how they affect a nursing infant, but that the benefits of breastfeeding outweigh the risks, the report reads like one giant warning.

Let’s start with antidepressants:

“Previous statements from the AAP categorized the effect of psychoactive drugs on the nursing infant as “unknown but may be of concern.” Although new data have been published since 2001, information on the long-term effects of these compounds is still limited. Most publications regarding psychoactive drugs describe the pharmacokinetics in small numbers of lactating women with short-term observational studies of their infants. In addition, interpretation of the effects on the infant from the small number of longer-term studies is confounded by prenatal treatment or exposure to multiple therapies. For these reasons, the long-term effect on the developing infant is still largely unknown…Because of the long half-life of some of these compounds and/or their metabolites, coupled with an infant’s immature hepatic and renal function, nursing infants may have measurable amounts of the drug or its metabolites in plasma and potentially in neural tissue. Infant plasma concentrations that exceed 10% of therapeutic maternal plasma concentrations have been reported for a number of selective serotonin reuptake inhibitors…”

As stated in the first sentence of this section, the evidence hasn’t really changed from when the last AAP statement on drugs and human milk was released, circa 2001. But the conclusion sure has. In 2001, the authors advised that “(n)ursing mothers should be informed that if they take one of these drugs, the infant will be exposed to it. Because these drugs affect neurotransmitter function in the developing central nervous system, it may not be possible to predict long-term neurodevelopmental effects.” In 2013, the author states “Mothers who desire to breastfeed their infant(s) while taking these agents should be counseled about the benefits of breastfeeding as well as the potential risk that the infant may be exposed to clinically significant levels and that the long-term effects of this exposure are unknown.”(p. e799)

This is where I start getting nervous. The last thing I ever want to do is discourage someone who needs antidepressants or another lifesaving medication from breastfeeding – especially considering I personally chose to take the small risk and feed my newborn breastmilk while I was on Zoloft (one of the many SSRIs that are categorized in both reports as “Psychoactive Drugs With Infant Serum Concentrations Exceeding 10% of Maternal Plasma Concentrations”, meaning that the levels of the drug getting into a newborn via breastmilk are clinically significant and of potential concern for a growing neonate). These are the risk/benefit scenarios we often discuss here on FFF – decisions that parents need to make (and deserve to make), armed with solid information and free from paternalistic admonishments that don’t have real world meaning. But I don’t feel that the new AAP statement – or the way that the media is reporting it – is allowing for a truly informed decision.

Notice the emphasis of the newer AAP statement – the advice given is to counsel the mother on the benefits of breastfeeding first, and then inform her of the potential risks and unknowns of nursing on her medication. Anyone with a grade-school understanding of psychology can figure out what that would sound like. (“Breastfeeding is extremely important and will save your child from every ill imaginable! But I should warn you that if you choose to nurse while on Zoloft, we can’t confirm or deny that your baby may turn into a werewolf when he reaches puberty. Your choice!”)

Maybe I’m arguing semantics here, but why couldn’t they avoid the paternalism of both the 2001 and the 2013 statement and simply advise doctors to inform parents of the risks and benefits of both feeding options, as well as the risks of nursing on medications, in an accessible, understandable way? And then help them mitigate the risks, no matter what path they choose?

Moving on… painkillers. The AAP is now agreeing with what I freaked out about in Bottled Up – Vicodin and newly postpartum, breastfeeding women are not a match made in heaven. And before you post-C-section mamas beg for the Darvocet, that won’t fly, either. Turns out that infants whose mothers used these commonly prescribed drugs  for managing postpartum pain have popped up with cases of unexplained apnea, bradycardia, cyanosis, sedation, and hypotonia; one infant died from a Vicodin overdose after ingesting the drug through mother’s milk. But hey- you can take (moderate) doses of Tylenol and Advil to manage that post-surgical pain, so no worries.

Are you starting to see why “Medications of nursing moms do not harm babies” might not be the most accurate headline?

Ummm…. Herbal remedies! Those have to be okay, right? They’re natural, after all!

Not so fast, sugar.

“Despite the frequent use of herbal products in breastfeeding women (up to 43% of lactating mothers in a 2004 survey), reliable information on the safety of many herbal products is lacking…The use of several herbal products may be harmful, including kava and yohimbe. For example, the FDA has issued a warning that links kava supplementation to severe liver damage. Breastfeeding mothers should not use yohimbe because of reports of associated fatalities in children…Safety data are lacking for many herbs commonly used during breastfeeding, such as chamomile,black cohosh, blue cohosh, chastetree, echina- cea, ginseng, gingko, Hypericum (St John’s wort), and valerian. Adverse events have been reported in both breastfeeding infants and mothers. For example, St John’s wort may cause colic, drowsiness, or lethargy in the breastfed infant…Prolonged use of fenugreek may require monitoring of coagulation status and serum glucose concentrations. For these reasons, these aforementioned herbal products are not recommended for use by nursing women.”

Wait. It gets worse. You know those galactagogues you were prescribed to increase your milk supply? Flush them down the toilet, says the AAP. The safety of Domperidone, for example, “has not been established.”

“The FDA issued a warning in June 2004 regarding use of domperidone in breast- feeding women because of safety concerns based on published reports of arrhythmia, cardiac arrest, and sudden death associated with intravenous therapy. Furthermore, treatment with oral domperidone is associated with QT prolongation in children and infants.”

The authors aren’t overly enthusiastic about other galactagogues, either, and instead encourage moms struggling with supply to “use non-pharmacologic measures to increase milk supply, such as ensuring proper technique, using massage therapy, increasing the frequency of milk expression, prolonging the duration of pumping, and maximizing emotional support.”

I’ve read the report 10 times now, trying to see where they could possibly come to the conclusion that this is a game changer; that it is at all newsworthy; that this is what counts as progress. To my untrained eye, it appears to be little more than a re-framing of old information to fit in better with the “breast is best at all costs” mantra, rather than a landmark “update” of an antiquated policy paper. Based on this report, how are pediatricians supposed to tell patients, in good conscience, that there is adequate evidence that it’s safe to breastfeed on “nearly all” medications?

For most of the meds in question, it probably is safe- similarly to how the risks of infant formula are scary on paper and far less daunting in real life, I honestly believe that we’d be seeing a lot of seriously messed-up kids if your absolute risk of nursing while on antidepressants was high. Just like many of us have made carefully weighed decisions to formula feed, feeling the weight of misery in one hand and balancing that with an increased risk of ear infections in the other, so shall we handle questions of breastfeeding and medications. The problem is not with moms making choices based on the facts we have- the problem is when respected, policy-creating organizations create false narratives that render us unable to make those choices in a truly informed way.

The report leans heavily on the work of Thomas Hale and LactMed, fantastic resources for research on these issues. I’m grateful there are people dedicated to focusing on this research – research that matters so much more than yet another associative study attempting to show that breastfed babies are smarter than formula fed ones. We desperately need more research on how commonly prescribed medications affect breastfeeding infants, not so that we can “forbid” women from breastfeeding, but so that we can help them reach their breastfeeding goals. This might mean timing medications so that they are mostly metabolized prior to nursing, or pumping for some feeds, or even -god forbid- using a little formula or donor milk for the feeds that have a higher amount of the drug coming through milk (these are tough things to figure out, sometimes, as people metabolize differently, as do babies, but it’s a good goal to have on the horizon). Maybe it means finding better medications. Or it might just mean allowing parents to ponder their own risk/benefit scenarios and respecting their decisions, whatever those may be.

Before we can do that, though, someone has to remind the AAP that they are doctors first, breastfeeding advocates second. Let the science speak, not the zealotry, and maybe we can start helping parents make truly “informed” choices.

 

Related Posts Plugin for WordPress, Blogger...