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

 

 

 

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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How To Prepare For Supplementing When Breastfeeding Your Baby In The Hospital

Mothers who experienced delayed onset of milk production or experienced low milk supply with their first baby often contact us for support to try breastfeeding again. They typically have anticipatory anxiety, because they have lost trust in their lactation professionals and hospital staff and are unwilling to attempt breastfeeding again without supplementation. They want to know how to supplement their baby until their milk supply becomes sufficient to feed their baby safely while providing proper stimulation to their breasts for optimal milk production.

The most common concerns expressed:

 

  • Fear of the pressure to exclusively breastfeed
  • Fear of failing to breastfeed again
  • Fear of advocating for themselves and their babies while in the hospital
  • Fear of being shamed by hospital staff when wanting to supplement until their milk comes in
  • Fear of being denied formula or not receiving it in a timely manner
  • Triggers from the previous negative breastfeeding experience, such as being touched without consent

Monica writes: “I lost confidence in breastfeeding because I didn’t make enough milk for my first son, who required hospitalization for severe jaundice and a 13% weight loss. I was devastated and furious when the neonatologist told me he was starving. In my birth hospital, my son had been forced to cry from hunger, and I was told my body would make enough milk for him by every lactation consultant and nurse in the hospital. I trusted them. They were wrong! I no longer trusted breastfeeding and decided to pump and bottle feed to ensure he got enough milk. I purposely delivered my second baby at a hospital that didn’t force me to breastfeed exclusively. After starving my son,  I was not taking any chances, and I supplemented my daughter after every breastfeeding session. My breastfeeding experience was the opposite of my son’s, and I remember tearing up several times because she was so peaceful and never cried.  Thankfully I supplemented her because it took five days for my milk to come in. Supplementing saved my breastfeeding journey, and we are still breastfeeding 19 months later.”

 

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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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The Baby-Friendly Hospital Initiative is The Worst Thing I Have Experienced in my 20 Years as a NICU Nurse

Dear Parents,

It’s taken me years to find the courage to contact the Fed is Best Foundation with my experiences of working in a baby-friendly hospital.  “Baby-Friendly” is the worst thing I have experienced in my 20 years as a NICU nurse. My colleagues and I have tried many times to express our concerns with the number of NICU admissions we receive. Eighty percent of our admissions are because of baby un-friendly protocols for hyperbilirubinemia, hypoglycemia, excessive weight loss, and dehydration in our hospital from insufficient breastfeeding. We are a small unit, and we have had around 150 plus admissions last year from insufficient feeding. Sadly, we’ve had bad outcomes.

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The Letter Not Only Protected Me; It Protected The Nurses Too

The Letter was from my psychiatrist. It was our way of beating a system that neither of us agreed with, or believed was good for my mental health. It provided protection for me to make decisions that went against the Baby-Friendly Hospital mandates. 

The amount of stuff a pregnant woman brings to the hospital for delivery gets progressively smaller, the more children she has. With my first child, I brought three bags; I ended up ignoring 90% of the contents and gave my husband fits when he loaded the car for the ride home. By the time I packed the hospital bag for my third child, everything fit neatly into a small duffel. Even then, I felt like I was overpacking. As long as I had a phone charger, some lip balm, and the Letter, I knew I’d be fine. 

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Dr. Nicole King Warns About Dangers of Baby-Friendly Hospital Initiative at USDA Dietary Guidelines Meeting

On August 11, 2020, Dr. Nicole King, Anesthesiologist, Critical Care Intensivist, Patient Safety Expert and Senior Advisor to the Fed is Best Foundation spoke at the USDA Scientific Report of the 2020 Dietary Guidelines Advisory Committee meeting warning of the dangers and patient rights violations of the Baby-Friendly Hospital Initiative. Watch her address below.

Good afternoon, my name is Nicole King and I am a mother and a physician.  As an anesthesiologist and intensive care physician, I am faced with life and death circumstances every day.  In no way did I ever consider breastfeeding my child would be as stressful as supporting a COVID patient through their critical illness.  Five years ago, I realized how wrong I was.

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The Loss Of Our Son Has Devastated Our Family – This Time I Will Be Supplementing With Formula After Every Nursing session

I had a beautiful, healthy pregnancy with Bryson, with the help of Clomid (a fertility drug), like my first pregnancy with my daughter. After about 31 hours of induced labor, Bryson was here. Seven pounds, twelve ounces, and seemingly healthy! He latched like a champ immediately, and we had zero complications of any sort while in the hospital. He had wet and dirty diapers and was breastfeeding well, every 2–3 hours. His discharge weight was 7 lbs, and I had a follow-up appointment scheduled for two days later.

NEWT is the first tool that allows pediatric healthcare providers and parents to see how a newborn’s weight during the first days and weeks following childbirth compares with a large sample of newborns, which can help with early identification of weight loss and weight gain issues. Bryson was discharged with a weight loss of 9.7 percent at 36 hours of age. The NEWT graph indicates his weight loss was excessive.

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We Were Awarded A Malpractice Financial Settlement Because My Baby Suffered From Starvation In A BFHI Hospital

By A Mother from the Fed is Best Community who wishes to remain anonymous

This is my baby girl in NICU. She developed a high fever, jaundice, and dehydration with a 10.1% weight loss 56 hours after birth while exclusively breastfeeding in a ‘Baby-Friendly’ hospital.

During our stay, the hospital pediatrician saw my baby twice a day but he failed to inform us she had a 7.2% weight loss in the 30th hour of life. Hence, we were not given the information to decide if we should supplement with formula.

According to a review published in the Journal Of Family Practice in June 2018, “exclusive breastfeeding at discharge from the hospital is likely the single greatest risk factor for hospital readmission in newborns. Term infants who are exclusively breastfed are more likely to be hospitalized compared to formula-fed or mixed-fed infants, due to hyperbilirubinemia, dehydration, hypernatremia, and weight loss.” They estimated that for every 71 infants that are exclusively breastfed, one is hospitalized for serious feeding complications.

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