Is Formula More Dangerous than Irreversible Brain Damage?

Is that some kind of sick joke? Infant formula is safe nutrition—scientifically created to replace human milk and thus consists of fluids and nutrients necessary to nourish a baby. Brain damage is irreversible.  That should be glaringly obvious, but it looks like the AAP Breastfeeding Section responsible for the recently released “Breastfeeding and the Use of Human Milk” (June 2022) has lost sight of this critical fact.

Let’s focus on this appalling statement:

“The need for phototherapy in an otherwise healthy infant without signs of dehydration and/or insufficient intake is not an indication for supplementation with formula unless the levels are approaching exchange transfusion levels.”

Hyperbilirubinemia (excessive jaundice) and Phototherapy

To explain why we are horrified, let’s look carefully at what the statement means. Jaundice is a common and usually benign condition experienced by about 60% of healthy newborns. It is caused by a substance called bilirubin, a breakdown product of fetal red blood cells after birth to transition to mature red blood cells. However, if a baby’s bilirubin levels are greater than a certain level and continue to climb, the risk for brain damage increases.

 

 

A baby should never be allowed to experience a dangerous bilirubin level, and all interventions should be utilized to bring the levels down quickly!

 

There is, however, a cost-effective preventable intervention available—it’s called adequate feeding of donor milk or infant formula with a bottle which is the absolute BEST way to reduce bilirubin levels. It also provides comfort for a baby who is lethargic, hungry, thirsty and has dry, chapped lips and mouth. Multiple blood checks will also be necessary to monitor bilirubin levels, which are painful for newborns.

To be clear, supplementation does NOT interfere with exclusive breastfeeding.  Exclusive breastfeeding can be resumed when the full milk supply has come in after the danger has passed. Brain damage can never be undone.

Source: The World Health Organization

This video educates parents about newborn jaundice and the importance of supplementing.

brain-threatening Jaundice is preventable

Jaundice high enough to require phototherapy happens to about 15% of newborns (according to a large 2018 study). Prevention of phototherapy from insufficient breastfeeding can be prevented with temporary supplementation. 

Ella (now two years old) was one of these newborns. (Her mother, Becca shared her story with us in 2019, after her baby experienced multiple complications of insufficient milk, while she received loads of professional advice not to supplement.) Ella wouldn’t have been supplemented with formula under these guidelines because her jaundice wouldn’t have been considered severe enough. Her pediatrician would probably disagree, given that he’s watching her closely for suspected developmental delay—a known complication of severe jaundice:

Ella, under phototherapy lights

Becca (Ella’s mother) and other parents of babies who experienced high bilirubin levels have to live with the knowledge that their babies didn’t get enough to eat and that it may have affected their brains. The psychological trauma of this cannot be overstated.

Medical Ethics: “do no harm” and informed consent

Rarely are parents told that increased feeding from supplementation with formula (or banked donor human milk if available) can prevent as well as reduce high bilirubin levelsshorten the need for costly and emotionally grueling hospitalizations, and most importantly, reduce their baby’s exposure to a substance that damage brain cells.

Instead of emphasizing the dangers of excessive jaundice, the guidelines claim that the higher bilirubin levels commonly found in exclusively breastfed newborns may be beneficial because bilirubin is an “antioxidant.” Studies on excessive jaundice are very clear—high bilirubin levels can result in developmental delay, cognitive impairment, and behavioral and psychiatric disorders. There are simply no facts—none—to support their idea that there are benefits.

In every other area of medicine, patients (and parents of patients) receive informed consent and counseling about their options, especially when a serious complication like excessive jaundice can occur. However, providing this information is not currently standard practice. In reality, the failure to fully inform parents of the causes (e.g., insufficient milk intake) and risks of newborn jaundice commonly result in parents going home believing they are doing what is best for their infants by avoiding formula supplementation. If their infant does not receive enough milk because the milk comes in late or it is not enough, then they may find a distressed or lethargic jaundiced, and dehydrated baby that now requires hospital admission for conditions that can cause permanent disability. It is unbelievable—yet true—that parents aren’t being informed that insufficient feeding problems and jaundice are currently the leading causes of newborn rehospitalization.

This lying by omission is an outrageous violation of patient rights.

Parents should be told that temporary supplementation in response to signs of infant hunger and jaundice can prevent and treat these complications. Supplemental milk, whether it be formula or banked donor milk, can reduce bilirubin levels in both insufficiently fed babies and babies who have excessive bilirubin due to other medical conditions (like blood type incompatibility) because elimination through digestion is the way babies remove bilirubin.

While exclusive breastfeeding can be resumed when the full milk supply has come in, and the danger has passed, brain damage can never be undone.

 

Sydney F.’s baby was supplemented for five days using our feeding plan, then exclusively breastfed. She is still breastfeeding at 11 months.

 

The authors’ concern seems to be that if parents are made aware that breastfeeding isn’t perfect, they might entirely stop. Or worse, parents may come to believe that there can be benefits to supplementing some breastfed babies with formula (especially jaundiced newborns) and that the narrative that exclusive breastfeeding is best for all babies (with rare exceptions) is false.

Parents can understand the concept of a temporary nutritional intervention to bridge the gap until their supply increases and how this can protect their baby and support continued breastfeeding. In other words, you don’t have to choose between breastfeeding and reducing your baby’s risk of excessive jaundice—you can do both! 

Five well-designed studies  suggest that they do understand this and that breastfeeding isn’t destroyed with temporary small supplements. How many clinical trials have shown that judicious supplementation impairs sustained breastfeeding? None. Regardless—and this is important—what gives anyone the right to withhold information because it might change how a parent chooses to feed their child?

WHEN PHOTOTHERAPY ISN’T ENOUGH: EXCHANGE TRANSFUSIONS

The American Academy of Pediatrics—the authority that advises all pediatricians—now recommends that pediatricians should not offer formula supplementation for jaundiced babies receiving phototherapy without signs of “dehydration and/or insufficient intake,” which they do not define until they are “approaching exchange transfusion levels.” An exchange transfusion is essentially a blood transfusion done when a jaundiced baby’s blood has become so toxic from high bilirubin levels that they risk severe brain damage, a condition called kernicterus.

Baby Finn was set up for a blood transfusion for jaundice. Photo by Jim Campion (his father) via Flickr

 

“Signs of dehydration” range from a slightly dry mouth to total lack of urination and a sunken fontanel (soft spot on babies’ heads). “Insufficient intake” can mean anything from insufficient to make the baby full and comfortable to only enough milk to keep the baby out of danger. We assume they mean the latter, as the Academy of Breastfeeding Medicine, which sets the standards for newborn exclusive breastfeeding management under the Baby Friendly Hospital Initiative endorsed by the AAP guideline, says that if supplementation is necessary, only 1–3 teaspoons (5–15 ml) on days 1 and 2 should be given, respectively. This is despite evidence that the newborn stomach is 20 mL at birth and that much higher volumes of supplemental feedings than they recommend actually reduces rates of jaundice readmission

How much milk a baby needs: Milk Calculator

How can the AAP discourage pediatricians from offering parents the choice to reduce their child’s bilirubin levels with formula when supplementing can rapidly reduce bilirubin levels, shorten the need for phototherapy, and prevent levels that can require a blood transfusion for any baby with high bilirubin levels?

Studies have shown elevated markers of brain injury in the blood occur by bilirubin levels of 19 and 20 mg/dL. Large studies have shown increased risk of developmental problems, cognitive impairment, speech/language impairment and behavioral problems in newborns who develop high bilirubin levels, even in the moderate range of 13.5–19 mg/dL, well below the threshold for exchange transfusion. These impairments are from BIND—bilirubin induced neurological dysfunction—which is less severe than kernicterus, but still seriously disabling.  

Have they ever met a parent whose child has to live with the lifelong disabilities caused by kernicterus, as shown in this video? 

Anyone familiar with the devastating impact of kernicterus would not be so casual about jaundice; in fact, they would be outraged at the suggestion in this report.

How can the AAP be trusted with making recommendations on infant feeding when they appear to have lost perspective on what constitutes safe versus unsafe conditions for infants?

Chloe’s baby Lucas

Can we all agree that infant formula is far better than the risk of brain damage? Can we at least let parents know these facts and put the decision in their hands? Can we please prioritize protecting babies’ brains over avoiding formula?

 

Written by Lynnette Hafken, MA, IBCLC, with Christie del Castillo-Hegyi, MD, and Jody Segrave-Daly, RN, IBCLC (Retired)

Resources

 

 

 

A Nurse Speaks Out About The Emotional Distress Parents Endure From Mandated Exclusive Breastfeeding Policies

“The sight and sound of babies crying out for food and fluids are why I decided to speak out. Babies are denied food and fluids to promote exclusive breastfeeding.”

As a mother-baby nurse, I’ve seen many preventable episodes of emotional distress for families in my thirty-year career. Unfortunately, The emotional distress increased significantly when the Baby-Friendly Hospital Initiative was implemented at my hospital. Some episodes of emotional distress are unforgettable, so I felt compelled to speak out about them, hoping to bring about the much-needed change to protect newborns from hunger and maternal mental health.

Mothers are incredibly vulnerable after giving birth, as their bodies transition physically and hormonally. They have a new life to take care of while recovering from birth and require compassionate, respectful, and individualized care. However, the Baby-Friendly breastfeeding protocol is one-size-fits-all and does not allow individualized care. Mothers must follow the BFHI protocol regardless of how they feed their baby or how complicated their birth was. We know as health care professionals that no protocol can be safe and effective without individualized care.

 Evidence based medicine cannot replace clinical judgment or account sufficiently for the complexity of individual cases. The limitations of EBM must be acknowledged and addressed so that it can be used effectively and without compromising patient care. -Mark R. Tonelli, MD, MA

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Belgian Mother Shares How Her Babies Became Lethargic After Being Denied Supplemental Milk by Hospital Staff

A Letter from Karlyne C. from Belgium

I would like to share my experience, in hopes that it can be of some use. My name is Karlyne, I am the mother of 3 children and I live in Belgium. 

My first daughter, Moïra, was born in 2018. I had not looked up any information about breastfeeding during my pregnancy, I thought that since it is a natural process, it would be easy and that there was nothing more to know than the fact that I should put the baby on breast when she showed signs of hunger. When she was born, that is what I did, I put her on my breast.

But she could not manage to latch on, she would systematically let go of the breast. I asked the midwives who worked in the maternity ward for help. They would crumple my nipples while firmly holding her head to try to shove them in her mouth despite her cries. Hours went by without her being able to feed, and I could tell she was getting weaker, all the while the midwives were telling me that everything was normal. In response to my insistence, I was told to express colostrum in a small spoon, and to give it to her, if it could reassure me. I produced at most a few drops of colostrum, yet the midwives kept telling me that I had enormous quantities, and that a baby’s stomach is minuscule, that some 5 halves of those small spoons every 2 to 3 hours would be more than enough. Those few drops, Moïra refused because the spoon in her mouth made her nauseous, so she would not take it.  The midwives refused to bring me a clean spoon for me to try again, telling me that supplementing once was enough. 

As days went by, Moïra stopped crying, Moïra stopped reacting, she was completely inert. Her [glucose levels were] no longer even measured, although I had been diagnosed with gestational diabetes, which placed her at higher risk for hypoglycemia from the get-go. I kept desperately asking for a bottle to feed her, and it was systematically refused, with the reply: “You said that you would breastfeed, so you will breastfeed.” My loved ones who visited with me refused to bring me a bottle and formula, telling me that I should trust the medical professionals who knew best what I had to do.

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Mother Speaks Out About Her Baby’s Death After Exclusive Breastfeeding: What She Wants Human Rights Organizations to Know

Josephine contacted us after reading Dr. Christie del Castilo-Hegyi’s letter to health care professionals about the dangers of insufficient breastfeeding and the Baby-Friendly Hospital Initiative. Josephine is from Lagos, Nigeria, and wants to tell her story, because she believes every mother should know how to supplement her baby safely until her milk is flowing, no matter what country she lives in, to prevent brain damage and death from insufficient breastfeeding. 

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My Son’s Life was Forever Changed Due to Insufficient Feeding While Exclusively Breastfeeding

By Pam Floyd

I am the mother of a 28-year-old who is neurologically and physically disabled. My son Chaz, fell victim to severe dehydration called hypernatremia due to insufficient milk intake from exclusive breastfeeding in the first days of life. I read breastfeeding books, watched breastfeeding videos, and studied every page of What to Expect. Unfortunately, following the advice of our lactation consultant and pediatrician’s advice resulted in Chaz going 6 days with absolutely no milk intake, requiring admission to the ICU and a drug-induced coma. Chaz was eventually diagnosed with seizures, developmental delay, and cerebral palsy.

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The New Seven Letter “F” Word

As soon as the word “formula” rolls off your tongue and leaves your mouth for everyone to hear, uncomfortable silence occurs. Parents are reluctant to talk about or admit freely they feed their babies infant formula. Most are suffering from the deeply entrenched shame and judgment that is associated with formula feeding; they have experienced it first hand in countless social media parenting groups, from friends, their health care professionals, WIC offices, and even in their hospitals.

How did we get to the place where talking about infant formula is profoundly divisive, shameful, and anxiety provoking for parents? 

 Let’s face it, infant FORMULA is the new seven letter F word. The scarlet letter F.  FAILURE. 

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I HAVE SO MUCH REGRET NOT QUITTING BREASTFEEDING EARLIER; WE SUFFERED AND FEEL VERY LET DOWN BY PROFESSIONALS AROUND ME FOR BEING SO ANTI-FORMULA

Knowing now how many babies have been lost or suffered an injury due to insufficient nutrition and dehydration in those early days, I feel so much anger towards those staff who dismissed my concerns, as we could so easily have gone the same way. By this point, my son’s urine was like brick dust and barely meeting the minimum frequency—but home we went, away from any medical supervision. 

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My Breastfed Baby Starved While Under The Care Of Health Professionals For 5 Weeks

My beautiful baby girl Mary-Kate was delivered by emergency c-section, and although there were complications during labor, she was healthy on arrival. Having done a bit of research and listened to the advice of professionals, as well as the threat of the global pandemic posing a risk, I decided I would breastfeed my daughter, to provide her with passive antibodies for COVID-19 from my milk.

I began exclusively breastfeeding in the hospital and the midwife said Mary-Kate had the perfect latch. I loved being a mummy, I could not stop looking at this beautiful little human me and my partner had created, but Mary-Kate was becoming increasingly unsettled. She was almost always attached to my breast and would fall asleep soon after latching on. I spoke to the health visitors, and we were told her crying was colic.  We began giving Mary-Kate lots of colic-type remedies. 

Each time somebody came to weigh her whether it be the GP, HV, or Midwife, Mary-Kate was not gaining and was in fact losing weight. I could not understand, because she was ALWAYS feeding. Nobody seemed alarmed by this. I was told to just keep trying, she might be a ‘slow starter’. Never once did they check to see what my milk supply was or how much she was getting. The professionals would leave, and I would carry on as normal. Baby attached to the breast, me trying to maintain some sort of order in the home, taking care of my personal needs and sleep. Mary-Kate would just cry and cry and cry unless asleep at my breast.  I was exhausted, I was falling asleep whilst holding my baby and I knew this presented its own risks.  Continue reading

I Supplemented My Baby Until My Milk Came In And We Are Still Breastfeeding At 3 Months

My son will be three months old tomorrow, and I’m reflecting on our nursing journey with gratitude. I had infertility and recurrent pregnancy loss prior to having him, and (after two rounds of IVF and six embryo transfers), he was born at 35 weeks. So we had a lot working against us for successful breastfeeding, but I wanted to try breastfeeding and I was ready to advocate for myself and the baby if needed in the hospital, since I knew I had significant risk factors for delayed onset of milk. 

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