FFF Friday: “I was too crunchy to formula feed.”

This is a pretty diverse community, but there seem to be two common narratives that ring true for most FFFs. Either they always planned to formula feed, or they always planned to breastfeed. Very few hadn’t given their feeding method much thought, prior to giving birth. In the latter storyline, the narrator typically has a healthy amount of Best Laid Plans, and has to redefine her expectations, beliefs, and often her own concept of “good mothering” when those plans fall through. 

I love reading these stories, because to me, they are an allegory about parenting. Things never go as planned, with kids. Or with pregnancies, for that matter. Or hell, with life. Strength, to me, is learning how to bend without breaking. 

Lana’s story is one of these. I don’t know if she’s realized how strong she is, but I hope she has. I hope you all know how strong, smart and capable you truly are. 

Happy Friday, fearless ones,

The FFF

Lana’s Story

I’ve spent the better part of my young adult life preparing to be super mom. I was a Nanny to three children, I babysat every age of child and infant I could lay my hands on- doing everything from teaching them to eat, potty training, sleep- you name it- I wanted to do it before I had my own child. I got my degree in early childhood education and immersed myself in child development research. When I got pregnant I enthusiastically signed up for Bradley Method classes- I was going to do this without drugs, without any of the awful stuff I’d read about over the years.  I had firmly identified as “crunchy”- I was cloth diapering, natural birthing, breastfeeding, babywearing- I had this whole “baby” thing nailed.

 

And I did. I gave birth without drugs and totally rocked it. My son latched 2 minutes after birth with a latch my nurse said was “the most perfect first latch I’ve ever seen.” He was perfect. And I was going to do right by him. He was put straight into cloth diapers, and I kept him skin to skin nursing as much as I could. Those first two days were awesome- I had become what I’d spent so much time preparing for.

 

And then we brought him home and it all fell violently apart. His first day home he screamed non-stop, an nursed non-stop. He never seemed satisfied. We ended up in the emergency room 72 hours after birth because I was certain something was horrifically wrong- only to be told my baby was dehydrated. I continued to nurse, refusing to give him formula.

 

A week later he hadn’t gained any weight. I was exhausted- still nursing round the clock. My breasts never got engorged, never felt “full”. My son never seemed to eat to satisfaction. He was constantly hungry. My son’s pediatrician put me on a low dose of Domperidone and told me to come back in two days. We did, and he’d gained 2oz- hooray! But after another weighing 4 days later he was once again stagnating. The health nurse grabbed my baby from me and told me he needed nutrition NOW and force fed my child a bottle in front of me while I sobbed and begged her to give me back my son- which she did- but only once I promised to continue supplementing with formula. I put myself on a rigorous pumping regime and called my pediatrician for a lactation referral- which I got for the next morning. For 24 hours I fed, pumped, and supplemented- and cried. I felt like with every bottle I gave my son I was pumping him full of poison. I was too crunchy to formula feed!

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At my appointment the next morning (for the record we’re now 3 weeks PP), the lactation doctor checked my son for a tongue or lip tie- neither of which he had. She then asked me to take my shirt off and a look of shock crossed her face. She consulted her notes and looked at me and said “You’ve had breast exams before, right?” I confirmed I had- MANY of them, and a breast MRI when I was in my late teens- due to all of my immediate female relatives having had breast cancer. My boobs were being watched extremely closely. She proceeded to ask me if I could ever remember any doctors I’d seen saying the word “hypoplasia” to me before. I confirmed I had never heard that word before in my life. She then left the room, popped her head back in and asked once again for my GP’s name. 10 minutes later she came back and gave me this speech:

 

“I’m so sorry, I don’t know how this was missed, I don’t know why nobody has mentioned this to you before- but it’s painfully obvious. You’re lacking the mammary tissue required to produce a life sustaining quantity of milk. I’m going to requisition your MRI to confirm this- but I’ve seen enough breasts that I can tell just by looking at you. You aren’t producing enough milk to keep him alive- you aren’t producing enough milk to even provide him with a full feeding. You responded to the Dom, which is unusual for hypoplasia- so if you’d like I can quadruple your dose and we can see what that does- but I don’t think you’ll ever produce enough milk to give him a full feeding. I’m sorry.”

 

So I took my baby and I went home and sobbed. I called my Mom, I called my best friend, I called my other best friend- and I sobbed. And my best friend- who’d breast fed 3 children, including one who has Down Syndrome- told me that this wasn’t worth it. This was not worth my sanity, not worth the pain. Breast feeding was great- but having a healthy, happy baby and Mommy was more important. And she went to the store and bought one of each kind of formula and came and sat with me as I tried to give my son a bottle. She told me my son would be fine. She told me how smart he was. How beautiful. How bright.

 

It took me three days to get engorged. Three days. And then I expressed that milk and it was gone. That was the end.

 

We bought a Baby Breeza Formula Pro (we called it the baby Keurig.) My son and I still had an exclusive feeding relationship for the most part. He learned to love his bottle, and I focused on the fact that my mother, my father, and so. many. of the adults I idolized and looked up to were formula fed and were JUST FINE.

 

I got ostracized from my local babywearing group, even after getting trained as a babywearing educator- because I bottle fed my son during a meet. They just moved away from me- like formula feeding was contagious. I finally found my tribe, those who were willing to overlook it, but I always noted the uncomfortable shifting when I pulled a bottle out. I always felt the need to explain- “I tried, I can’t, I have a diagnosis…” And while I like to think I’ve made peace with it, it still pains me. My son is now totally off formula at 13 months- he takes one bottle of cows milk first thing in the morning and otherwise drinks from a sippy cup. And I’m looking forward to smashing my bottles in a symbolic gesture of letting it go (I do plan on having other children- but I’ve hated the bottles I purchased in bulk under duress, I plan on buying new ones for #2.)

 

And he is just fine. He’s smart as a whip. Of all his breast fed peers he is the only one who didn’t have a severe illness in his first year. He uses sign language. He crawls and cruises like a champ. He has a hilarious sense of humour. His first word was “yes!”
Thank you for this website. For sharing the stories. Reading them has brought me further in my healing journey.

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Feel like sharing your story? Email me at formulafeeders@gmail.com to submit an essay for FFF Fridays. 

FFF Friday: “Why did no one tell me about this?”

The history of infant feeding is fascinating to me, mostly because it’s such a prime example of human innovation. In today’s Western society, we tend to romanticize the days of yore, favoring ancient practices in the approach to nutrition, medicine, and especially birth and parenting. There is absolutely nothing wrong with this, if this is what you prefer – but I think the downside is that we start resenting modern conveniences and progress. Don’t get me wrong, I’m a total Luddite about many things (I will never trade in my dogeared, musty-smelling paperbacks for a Kindle; I think Facebook is the downfall of humanity) but I also freaking love my DVR, read Popular Science and geek out, and think medical advancements are the coolest thing since sliced bread. I love that we can cure diseases, prevent others, and take away the pain from childbirth for those who desire this.

So I really, really love Emily’s story, because it speaks to all of this, and then some. Because nature isn’t always right. Humans aren’t always right. In fact, both of them are wrong a lot of the time. But when they can work in tandem and correct each other’s mistakes, that’s a beautiful thing. 

 Happy Friday, fearless ones,

The FFF

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Emily’s Story

My husband is a biologist, and he’s interested in evolutionary biology. Through him, I’ve also developed an interest in this, though I’m not at all a science person so my understanding is limited.

When I learned about insufficient glandular tissue (and that I had IGT), I didn’t understand. If our bodies were made for breastfeeding (as nurses, lactation consultants, et al. kept telling me), how is it that IGT is a thing? Why it is that the gene for IGT didn’t die out when our bodies didn’t do what they were meant to do and we couldn’t feed our babies?

I thought about this as I was pregnant with my second child. With my first, we had tried breastfeeding. He had a great latch and a strong suck for all the good it did him. I just couldn’t produce enough milk. I hadn’t even heard of IGT back then. Neither had the myriad nurses, lactation consultants, doctors, or La Leche League leaders, presumably. Or if they did, they never told me about it. LLL leaders were happy with telling me that I wasn’t dedicated to breastfeeding and that I was wrong when I said he wasn’t producing dirty diapers. I just couldn’t tell they were wet, she said, because I used disposable diapers rather than cloth. (To be fair, some of the LLL leaders were much nicer and encouraging.) Lactation consultants must have seen me as a cash cow and tried to sell me products and services that weren’t even calculated to help my supply issue. I’ve come to think of them as predatory.quotescover-JPG-14

And so, thinking that breast is best, my routine with my first was breastfeed, give breast milk that I had pumped earlier, supplement with formula, and pump while he sleeps. When that was all done, he was up again. I think a lot of readers are familiar with this pattern. I was even on some medication from my midwife to try to increase my supply, but all it did was make me sleepy. Eventually, I stopped. I realized that an awake mommy who could play with her baby was more important than breast milk.

During my second pregnancy, I learned about IGT, in particular that I might have IGT. Instead of feeling relieved or justified (so that’s why I couldn’t breastfeed!), I felt lied to and betrayed. Of all the people I spoke to when my first baby was born, all the medical professionals and self-professed breastfeeding experts who tried to make me feel bad, give me medication, or sell me useless and expensive equipment, why did no one tell me about this? They all said that our bodies were meant to do this, that we have been doing this for thousands of years. They never said that maybe my body wasn’t meant to do this. And if, as they said, this is what mommies are designed to do and I can’t do it, are they implying that I shouldn’t be a mommy?

Survival of the fittest doesn’t mean survival of the physically strongest. It means the one who is most able to adapt to her surroundings will pass on her genes. People say that women have been breastfeeding for thousands of years, but they neglect to mention that we have also been using wet nurses, animal milk, and baby bottles for that long. The gene for IGT didn’t die out because humans are creative, intelligent, and caring enough to feed their babies when their bodies don’t work the way other people think they should.

Never do I feel more human than I do when I give my baby formula. Bottle feeding my babies reminds me of humans’ problem solving ability that allowed us to evolve into who we are today, and probably did more for the species than mammary glands ever did. And we’re all part of this intelligent species, whether we bottle or breastfeed.

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Feel like sharing your story? Email me at formulafeeders@gmail.com.

“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

 

 

FFF Friday: “She assured me that all I had to do was try hard enough.”

I may be biased, but I really think FFF Friday stories should be a mandatory part of any IBCLC, CLC, or maternity RN training. This one, in particular, sums up everything that is wrong with how breastfeeding is handled in our society. It’s not about whether breastfeeding should be promoted or not, because right now, it’s going to be. That won’t change. But what needs to change – like, yesterday – is the completely asinine approach that we use to do so. We should be helping mothers, individual mothers, and not adhering to rigid “rules” about what breastfeeding is “supposed” to be, “supposed” to do, or “supposed” to feel like. If you don’t agree. please read Lisa’s story. Then let’s talk. For real – let’s talk, in an honest, open, intelligent way – and tell me how this is okay. 

Happy Friday, fearless ones,

The FFF

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Lisa’s Story

I always wanted to be a mother from the time I was a young teen and held my infant baby sister in my arms as I rocked her to sleep. My mother raised and breastfed all seven of us. It always seemed perfectly natural, and this is how I pictured life… a sweet baby in my arms and latched to my breast. When I had my first child, he was totally perfect, and I was shown awkwardly how to latch him and get that working right. I proudly nursed him and continued after I left the hospital. It never entered my mind to even buy a bottle ahead of time because I didn’t plan to need one. I hadn’t even heard of the option of pumping, I just wanted to breastfeed. It went without my notice that my breasts never changed in pregnancy, that I never had let down, and that I never felt engorged or that supposed tingle feeling of milk coming in (because no one had ever told me while pregnant or even after what I should expect in the least even if it was working right). When we left my son had jaundice so we kept checking his levels, and within two days of coming home, we had the bili light suitcase. That’s just miserable, but I had no idea that his increasing lethargy, and jaundice was due to not enough to eat. I thought he wasn’t eating because he was lethargic from the jaundice. That’s what they told me would happen. I started to worry when I saw that he was always so tired, too tired to cry much, and he was looking thinner and more frail… bird like really. I hated not being able to hold him while he was under those lights, and could only do so to feed him. Finally, I listened to the voice I heard in my heart telling me he needed more… and I gave him some ready to feed formula I had gotten at the hospital. (thankfully before they banned such practices!) He eventually recovered, but my milk didn’t come in. Everyone assured me it would and I asked every known relative for help. I was doing it all right.. but a week went by, and nothing changed. I talked to the LC from the hospital who told me that it could be “normal” with a first baby and to keep letting him eat. She set me up with a pump. I spent so much time pumping and feeding, and desperately trying to sleep that I could hardly cope with the times my son was awake because I was so exhausted. At three weeks, I plain gave up and bought bottles. The doctor recommended formula because he was continuing to lose weight. To this day he’s quite healthy.. no allergies, asthma, or lower IQ that formula supposedly causes.

While I was pregnant with my second baby the “Every woman can breastfeed” campaign started. I had lost a few friends in new mommy groups online because of my experience, but I was redeemed in their eyes because I was DETERMINED that I would breastfeed this time around. I hired an LC before I was due. She assured me it was all possible and all I had to do was try hard enough. I told her of my previous experience, and she reassured me with all the common platitudes of “every woman can breast feed”, and “breast size doesn’t matter”. I even told her my breasts don’t get bigger in pregnancy, and this didn’t even faze her. I joined an online mentor group where they assign an experienced breastfeeder as your mentor to talk to about it and keep encouraged. I had my supply of oatmeal, bottled water, goats rue, domperidone, reglan, fenugreek, all the galactagogues, the books on correct latching, nipple shields, a hospital grade pump, an SNS kit, boppy, nursing bras, nursing pads, lansinoh cream, nursing cover, and even meditation tracks to relax me while I breastfed and walked me through breastfeeding hypnosis. I was SET!

 

My second son arrived just barely after Christmas day via induction for pre-eclampsia. He was also a little bit jaundiced when we took him home, but I figured that was normal. Two days later, again we had the bili lights, but this time not only the suitcase, but the bili blanket as well. They worried more about his levels, and he struggled more than his brother. He lost more weight, resembled a sickly struggling baby bird even more. Looking back, I should have seen these as warning signs. I hardly changed diapers.. another warning sign I should have seen, but I was FAR too focused on breastfeeding. I was latching him and feeding him every 2 hours if not every 90 minutes… feeding him till he wouldn’t suck any longer (about 30-40 minutes total), and then pumping for another half an hour to 45 minutes before grabbing about 20 minutes of sleep and starting all over again. I did this night and day.. could hardly stay awake, and my poor toddler suffered for it. I had to have people come in and help care for him because I literally did nothing but breastfeed. I still had no changes in breast tissue. I had no let down, no tingle, no engorgement, no leaking… nothing… but! When I squeezed, there was a drop there. My LC assured me that all was well despite his weight loss and my milk WOULD come in. I kept going.. popping the pills.. and the whole regimen until the 2 week appointment.

He had lost too much weight. He was classified as “failure to thrive” and I was sent immediately to the hospital. I was so exhausted, and confused! I was doing the right thing! I was breastfeeding more than ever before.. how could this be happening to me??? To my baby??? I bawled and sobbed all the way to the hospital. It was a grueling three days that we were there. I stayed the whole time feeling utterly horrified that I hadn’t realized something was wrong. They ran test after test after test on him, and filled him with IV fluids. That was the best I’d seen him look! Then one day they came in just after I visited the pumping room and brought back my container of milk. I proudly proceeded to put a nipple on the bottle feeling very happy that I’d gotten more than ever before! I had just produced 1/3 an ounce… from both breasts combined! The nurse and the doctor exchanged looks and looked a bit horrified. They asked me if that was common, and I explained no.. ¼ an ounce was common, but I nursed him very frequently. They asked to do an exam on my breasts, asked a lot of questions. They wanted to know what the LC had told me, what I was taking, how many wet diapers, and so on. At the end of this exam the conclusion was laid on me… there was nothing wrong with my son. The problem was with me. They talked about Insufficient Glandular Tissue (IGT). I was confused. I regurgitated “every woman can breastfeed!” and the doctor explained that just wasn’t true in my case, nor would it ever be. He said that no amount of supplements and trying and pumping would ever help me produce more than I was, and that exclusive breastfeeding was not possible for me. My world went spinning. I had done everything right!! Why was this happening to me? I took my son home, and began to feed him formula feeling like a complete failure. Very obviously I could not breastfeed him, and he needed all the calories he could get at that point.

And then came the rejection. Almost every mommy in those new mommy groups online rejected me. I was lazy they said. I just didn’t try hard enough. They listed all the things I should have done or should continue to try. I had done them all. There was no tongue tie, or latch issues… they utterly rejected the notion that I was a woman who couldn’t breastfeed… and I was called names, ostracized, and ridiculed. Even WIC laughed at me and said that I had given up. I bawled. I spent HOURS bawling and sobbing. I developed post partum depression, and no one cared. Not my doctor’s office, not the LC’s who were long since done with the failure that I was…. Not the mentor because I was beyond her advice or care. No one. I sobbed and bawled and was miserable. I remember very little of that son’s infancy because I was so alone other than my husband who tried to console me. I had done the best I could he said… I had given everything I had to give… but every woman can breast feed… I would reply. No joke… I had believed that lie, and it broke my heart.

It was years before I stopped crying and grieving over the breasts that I have apparently only for display. I was broken. My son was my consolation. Son #2 is still very healthy… despite all the evil wicked formula. He has no asthma, no allergies, and no medical problems at all. He is also ahead of his class in school and does not lack for IQ.

I experienced a miscarriage, and then fell pregnant with my third son. I knew from the start that I could not breastfeed. I didn’t even bother to try… not at all. What was the point really? I told the hospital up front that I would be formula feeding. They asked why, and did I know about the benefits of breastmilk? Yes of course I knew, but I had IGT… “you have what?” How can a hospital not have ANY CLUE what that is? Well…. Because ‘breast is best’ and ‘every woman can breastfeed’. They repeated these things so often I think they honestly believed them. Miracle of miracles though – this son passed all his meconium MUCH faster, and did not need bili lights at all! His Jaundice was very mild, and I found that I enjoyed him as a newborn so very much! I would hold him and feed him his bottle and sing to him. I found that the bonding thing wasn’t about the source of the food at all, but about love, and about caring for my sweet baby. Oh how I enjoyed that little boy! I was not exhausted, and I was fully capable of being the mother he deserved. I wished I had been properly diagnosed years ago! I could have enjoyed two previous babies so much more, skipped all the hospital bills and misery and worry!

WIC still didn’t believe that IGT was a thing. They told me I had to have x-rays to confirm it… that I didn’t have proof. If you ask me, I think they didn’t like that I had a legit medical reason they couldn’t “educate” me out of. The heavily leaning towards breastfeeding was evident… if you breastfeed, they give you twice to three times as much babyfood at that stage. I tried not to let the jabs from other mothers and the dirty looks when I pulled out a bottle get to me. It still stung some.

Then came five more miscarriages and immense heartbreak. I wanted desperately to have another child… and I wanted the feeling of breastfeeding again. I knew that wasn’t possible exclusively, but I could give what I do make right? As tiny as it is…. FINALLY! I conceived and though the pregnancy was rough, I made plans to combo feed, and to not give a flying flip what anyone else thought. I had been through enough grief and heartache, and I more than deserved to enjoy my daughter! I told the hospital staff when they asked that I intended to combo feed and that I could not exclusively breastfeed.. I had IGT. They smiled and said “Ok. Do you want the LC or would you like some formula brought?” There was no prejudice in the nurse’s voice. I asked for both. The LC came in, and saw that I was using an SNS system to feed formula. I explained that I had IGT, and don’t produce much, but I wanted to enjoy breastfeeding because I liked the feeling of it. She smiled, and asked if she could look at me kindly. She nodded and said she confirmed that diagnosis, and that she thought I was impressive by knowing what I wanted and finding the means to do what I could. She was very kind, and not pushy. I appreciated this. My daughter is now almost 3 months. My tiny bit of milk dried up at 2 months, but oh how I cherished the longest breastfeeding relationship I have ever have even if it wasn’t exclusive! How I wish that more nurses and LC’s had treated me this way!

If there is one thing I found lacking in this last experience, it is that I was never given instructions about how to safely prepare formula, or for that matter… how to prepare it at all. I was handed nursettes, or cans of formula and waved away. I am still learning all the better ways to feed formula despite this being my fourth baby. I find myself feeling angry when other women are bullied and mistreated as I was by WIC and all the people who lied to me, or weren’t educated on biology to know that not every woman can breastfeed. I would have loved to breastfeed more, but that was never a choice I could make no matter how hard I tried. Some women do have that choice to breastfeed… and some prefer to formula feed. I now respect all mothers. You never know what she has been through.

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Want to share your story? Email me at formulafeeders@gmail.com.

FFF Friday: “I imagine getting to know my newborn without the stress of trying to force my body to make milk…”

“I’m a mom who tried to breastfeed but had to switch to formula.  It isn’t an unusual story but when it is your own story, it feels anything but ordinary. It’s painful and heartbreaking and exhausting and lonely.” This is how Mandy’s story begins, and I wish I could fit these sentences on a t-shirt. It pretty much sums up why I keep FFF going – even as I blog less and less, and focus more on advocacy, practical and policy work, I think it’s vital that this space exists to publish your stories. Because every one, no matter how similar it is to the last, matters. It’s yours. Yours alone. But in telling it, maybe you- and those reading it – will feel a little less lonely. 

Happy Friday, fearless ones,

The FFF

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Mandy’s Story

I’m a mom who tried to breastfeed but had to switch to formula.  It isn’t an unusual story but when it is your own story, it feels anything but ordinary. It’s painful and heartbreaking and exhausting and lonely.  Your friends and family have so many words and tips to offer but so little helps. Your modern female mind betrays you and tells you that you are less of a woman—less of a mother—because you cannot breastfeed, though you know that thought is irrational and untrue. For me, it is a thought I struggled with long after the last drop of breast milk fought its way out.

I had my first baby in 2011 and when the stick turned blue I immediately enrolled in the University of Google and learned everything I could about pregnancy, labor, delivery and, of course, breastfeeding. Breastfeeding was the obvious choice and I had no question about whether or not I would. I even got annoyed with people who asked which I would do, (aside from being annoyed simply because that is a rude question). Why would I even consider formula when “breast is best,” right? And how much easier could it be? You have a baby, they latch on, the milk comes in and that’s that.  I even remember the lactation consultant reassuring an expectant mom in my breastfeeding class who asked, “What do I do if I don’t make enough milk?” that you WILL make enough milk. Your body will ABSOLUTELY make enough milk for your baby. Supply and demand. Very simple.

I’d like to smack that lady.

My daughter was born and she latched on but I waited and waited and no milk ever came. Well, no more than an ounce every three hours. I was an overwhelmed first time mom and nursed less and less until eventually I stopped trying altogether and I switched to formula exclusively after three weeks Boom…formula baby.

When my daughter was 3 months old I became pregnant with my second baby and I was hell bent on breastfeeding!  I had been recently diagnosed with hypothyroidism and I was certain that had to be the reason for my previous struggle and now that I was controlling it with medication, I’d have no problems with milk supply. I even had dreams about freely flowing breast milk and hoped it was a sign that buckets of liquid gold were in my future. I knew that I sort of fit the profile of someone with insufficient glandular tissue but tried to put that possibility out of my mind since there is really nothing you can do to overcome that. I was going to remain determined and hopeful.

When baby girl number two arrived, she was nine pounds of cuteness and latched on to the breast with the expertise of a baby twice her age. I was more than proud; I was teeming with hope! This time I was careful to nurse on demand and pump right after nursing to increase my supply to no avail. I still only produced a maximum of one ounce every three hours. As my big girl got bigger she just began to get frustrated at my out-of-order breast but I just couldn’t give up on it. To complicate things further, her stomach and palette seemed to not tolerate any of the five different formulas we gave her. She seemed to only tolerate breast milk and I couldn’t make any. For about five months I received pumped breast milk from dear friends and trusted donors while I continued to pump around the clock to get my measly ten ounces per day and, of course I supplemented with formula.

Through thousands of tears over six months I told my husband I would stop when she and I were both ready because the round the clock pumping was killing me. Eventually my supply of frozen donations began to wane and she was getting more and more formula. She was doing better with her soy formula and starting to try solids and doing well with that too. And I was emotionally ready. I clearly remember sitting in my “pumping chair,” one day and just deciding that I was spending more time than it was worth for eight to ten ounces a day, pumping. I cut back slowly on my pumping sessions until I was not pumping at all and she was on formula exclusively. Boom…formula baby number two.

But this time I felt a freedom in the change. For one, I knew I’d done and tried everything possible: power pumping, fenugreek, Reglan, Domperidone, lactation cookies, oatmeal, water, visits to the lactation consultant, (side note: you know it’s pretty hopeless when the lactation consultant says, “you know, formula isn’t that bad”). I did everything and I felt good switching to formula. I didn’t have the shame I had before. I still have moments of regret or sadness that it didn’t work but I do not feel like a failure as a mother. When I see my friends nursing their babies or pumping an abundance of milk I am a little sad and jealous but overwhelmingly, I feel happy for them because I know the struggle.  And when I see a friend choose formula with less internal struggle than I had I am happy for them as well.

I go back and forth on whether or not our family is complete with only our two children, but when I contemplate a third or fourth child, I cannot help but think of what my feeding choice would be. I say with absolute freedom and confidence that I would start out of the gate with formula. My body does not make a full supply and the struggle to get what I can is too gut-wrenching to go through it one more time. I actually fantasize about being in the hospital room and requesting the formula for my imaginary baby with pride and confidence.  I imagine getting to know my newborn without the stress of trying to force my body to make milk that it just cannot make. I am not sure if that little daydream is enough to have another child but it makes my heart happy. I wish everyone could feel that confidence in their feeding choice from the get-go whether they are a fearless formula feeder or a courageous nursing mommy.

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Have a story you’d like to share? Email me at formulafeeders@gmail.com

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