“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

 

 

Suzanne Barston is a blogger and author of BOTTLED UP. Fearless Formula Feeder is a blog – and community – dedicated to infant feeding choice, and committed to providing non-judgmental support for all new parents. It exists to protect women from misleading or misrepresented “facts”; essentialist ideals about what mothers should think, feel, or do; government and health authorities who form policy statements based on ambivalent research; and the insidious beast known as Internetus Trolliamus, Mommy Blog Varietal.

Suzanne Barston – who has written posts on Fearless Formula Feeder.


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

  1. Wonderful interview!!! It is incredible that people come to me and say that there is no such thing as not producing enough milk, that it is just a matter of letting the baby nurse more often and blah blah blah… After I realized that my baby was hungry for the first 10 days of his life I vowed to never, ever, let him go hungry again! I’m a happy combo feeder 🙂

  2. Wow – I’m speechless.

    I gave birth to my gorgeous son by Cesarean section in January in a certified baby friendly hospital in New Zealand. By day three I had no milk and he was jaundiced. If it wasn’t for my wonderful independent midwife who could clearly see what I could not (that he was starving) I wonder what might have progressed? It was she who demanded that my nurses give him formula on that third day which he lapped up as if it was mana from heaven. I felt simultaneously relieved and guilt ridden. I had to give written signed consent that the formula was being given for ‘medical purposes only’ – it truly beggars belief.

  3. I read this and feel so horribly guilty that Iet my daughter starve in the name of exclusive breastfeeding. She was jaundiced and hospitalized at 1 week old after losing 15% of her birth weight. Now I worry that I’ve increased her risk of autism. My next child will be supplemented if needed.

    • Megan- PLEASE don’t worry. Honestly. My reason for sharing this interview was not to scare anyone, but rather because I think the doctor makes great points about why there’s a need to revisit certain recommendations regarding weight loss, exclusive breastfeeding, supplementation and so forth. Until there is some clear research linking autism to this, there’s no reason to worry any more so than worrying about if some chemical in the environment leached through breastmilk is the culprit, or a lack of a certain nutrient in formula, or any other theory. They are all just theories. I think there’s validity in asking for more research when there seems to be a plausible hypothesis, but at this point, that is all there is.

  4. What a wonderful fresh minded collection of ideas!
    The advice #3, while probably won’t be followed by the hospitals any time soon, should be spread to every expectant mother out there, right after “ask for APGAR score”. It’s awesome in its simplicity: find out the birth weight, calculate 7%, and see if your baby reaches the weight – 7% to figure out if you want to supplement (not wait until 10% weight loss).
    One thing that kind of rubbed me the wrong way: “giving mothers permission to supplement their child if they go under the weight limit at home.” Excuse me, I need a permission to do something in MY OWN HOME? (Okay, I did hear from one woman that she wasn’t allowed to close the draped in her house because the fabric would lose its nice shape, but I still think it’s rediculous.) Um, no. It’s my house, and I do what I please in there, including supplementation with baby formula, and everyone else can shove it.
    But I guess it’s just me being sensitive.
    The interview is wonderful. Dr. Del Castillo-Hegyi is fighting a good fight.

    PS. Do formula companies know they help prevent autism? Now, that’s some good PR, right there. 🙂

  5. I really wish she wouldn’t even touch the autism thing unless there’s 100% proof that it WILL CAUSE AUTISM. The “CAUSES AUTISM” scare tactic is so overplayed that it’s a complete turn-off at this point. It’s also offensive and damaging to the autistic community. Autistic people and family members are working very hard to remove the stigma of autism, scare-mongering like this only serves to hurt them.

    This use of an unproven autism link puts it in the same camp as anti-vaxxers. It does nothing to truly help her case, only hurts her credibility.

  6. I’ve been following FFF since my own breastfeeding struggles – I found it when I became terrified that I might have to use formula. While we ended up being able to successfully breastfeed, this website made me realise that the most important thing was feeding my baby, not the how. The core recommendations above seem like a great idea to me, I nearly abandoned breastfeeding as I thought baby was not getting enough milk, but had these recommendations been implemented I would have realized earlier he was. I wonder how many woman gave up breastfeeding in this case? I think these recommendations are win win – they stop babies starving when there are real issues, and reassure mothers when there are not. So I think breastfeeding advocates should get on board as well!
    I do agree with previous commenter re autism – best to be careful here until a link is proven.

  7. I know breastfeeding advocates hit on the do not feed formula ever it will prevent supply and demand, while there have been some studies showing that supplementation can actually help breastfeeding in the long run. I wonder if anyone has studied whether the supply and demand thing is even a factor before your milk comes in, or how big of a factor? My first lost right around 7% in the hospital and I didn’t want to give a bottle to not screw up breastfeeding…however did it really matter? And if one bottle in the middle of the night is ok how much more human and sane can mom feel?

  8. Thank God for this interview. I just gave birth fve days ago and didn’t lactate until the third say. As it is, my milksupply is still insufficient but i do see my daughter feeding frantically each time she latches. I felt really guilty about giving her supplemental feedings of one ounce each time shecries uncontrollably. My heart juat could not take it. Thank you for the reassurance that i am doing what i feel is best for her even when i am advised otherwise. O am relieved and i can mow feed her without having to feel ashamed that we supplement.

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