Dying for Milk: The Pam and Chaz Floyd’s Story

By Pam Floyd, Mother and Fed is Best Advocate

Twenty-five years ago, Chaz, the son of Pam Floyd, was born and developed hypernatremic dehydration from insufficient breast milk intake while exclusively breastfeeding. Chaz developed brain injury from dehydration and now lives disabled with cerebral palsy. Their story was published on the front page of the Wall Street Journal. She was subsequently interviewed on 20/20, which prompted a similar feature on ABC’s Prime Time Live. Pam contacted the Fed is Best Foundation to share her story again to warn mothers of the dangers of insufficient feeding.

Chaz develop hypernatremic dehydration from insufficient feeding while exclusively breastfeeding

“25 Year Anniversaries Should Be Celebrated Not Served As A Warning”

Twenty-five years ago my son almost died.  He was only six days old. I had chosen to breastfeed, as everyone around me kept reminding me that ‘breast is best.’  So I followed their advice, and I exclusively breastfed. Even though I felt like something wasn’t quite right those first few days, everyone assured me everything was fine.  The nurses in the maternity ward suggested that since I was a new mother, I wasn’t able to appreciate how much he was getting. The home health nurse that visited me, courtesy of my health insurance, the day after I left the hospital, reassured me that as long as he was getting six to seven wet diapers a day, then he was getting enough. And the nurses in my pediatrician’s office told me not to worry, that he was a big baby that he would eat when he got hungry. And my personal favorite, “the great thing about breast milk is that you never have to worry about how much or how little he’s getting. Because he’ll always get what he needs.” Well, that works great, if your milk comes in.  My colostrum wasn’t enough for my son, Chaz. And my body never produced enough milk to keep a 10 lb. 4 oz. baby boy healthy.

Then when my son’s eyes started rapidly zig-zagging back and forth on that sixth day of life and I called the pediatrician’s office to tell them he was having a seizure, they told me that I didn’t know what I was talking about and that sometimes newborn’s eyes do that as they often wander.  Well, the pediatrician finally agreed to see us. We were immediately sent to the emergency room. Then we were transferred to the children’s hospital. There, my son was put into a drug-induced coma until his seizures were under control. His diagnosis was a stroke due to hypernatremic dehydration.  Children’s Hospital had me use their hospital grade breast pumps those first few days. The most I ever pumped was 3 cc’s. About a teaspoon. Usually, I just came back with mist. Or what looked like spit. There was never milk. I never got engorged. I never leaked. There was never any milk.

I got mad about this.  Especially when I found out that it can and does happen regularly.  It didn’t show up in any of my baby books or videos. So I called our local newspaper, The Virginian Pilot, and asked them to write an article about it, they did, it was called, “Mother Knows Best.” That was later revived by a journalist from The Wall Street Journal in an article entitled, “Dying for Milk: Some Mothers, Trying In Vain to Breast-Feed, Starve Their Infants — `Yuppie Syndrome’ Among Well-Meaning Parents Stems From Bad Advice — A Generation of Perfectionists.”  We made the front page with that one. Of course, that set off a media frenzy. Continue reading

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I Begged for Food for my Baby and I Begged for Nipple Relief at my BFHI Hospital

It was December 13th at 2:30 in the morning. My water broke as I was sleeping. I woke my husband up and the panic set in. My son was a scheduled C-Section due to the fact he was breech and he was going to be a big baby according to all the scans. I was scheduled for the 18th, which was my birthday, but he decided to come early. My husband and I rushed to St. Joseph’s Hospital in Tacoma, WA. This hospital was a “Baby-Friendly” hospital, which meant they push things like exclusive breastfeeding, no pacifiers and no nurseries. I didn’t think much of these things at the time, as I was a first-time mom and hadn’t pondered on them much. On paper, this all sounded great, and I was excited to go there. I had a simple birth plan: no circumcision and I wanted my husband in the operating room. That was it really. I trusted the doctors and nurses there to help me out.

The doctors were amazing. I got into the triage area at about 3:00 am and the doctors were awesome about monitoring me and keeping me up-to-date. The anesthesiologist and my OB helped me feel so comfortable. The cesarean went so well, I was in complete shock. After we had our initial bonding as a first-time family, things began to head downhill. By this time, I had been asked about 3 times if I was going to breastfeed, and I was planning to, but I would be doing a lot of pumping since I run around for my job. I was hoping to learn how to use a pump. However, the hour of recovery before being moved to my room was the start of the insanity. I was pushed to try and get my son to breastfeed, even when I was still throwing up from the medicine. I wanted to so badly, but I was vomiting every 15 minutes. I eventually could last for about a half hour before throwing up on myself again.

When I tried to breastfeed for the first time, my breasts were manhandled more than I had ever experienced in my life. I never consented to having so many nurses touch my breasts. I should have been sterner about not having so many people manipulating my breasts in order to breastfeed, but I was still out of it from the surgery.

To give some background at this point: My son was conceived using fertility treatments after many unsuccessful tries and he was born two weeks early. I was only an hour in recovery after a major surgery and I had a swarm of nurses touching my breasts to top it all off.  After trying for several more hours, my nipples became so cracked, they started to bleed. I had about 10 different nurses trying to get him to feed and they all commented on his good latch. Okay! Great! Good latch means he’s getting food, right? No. Unfortunately, I was so dry nothing was there for him and I had to wipe blood off of his lips.

Fast forward to about 36 hours post-birth and my husband and I had no sleep at this time because our son was crying so much from being hungry. This hospital had no nursery and I was supposed to take care of him while recovering from major surgery. My husband helped as much as possible, but he obviously couldn’t help much with breastfeeding. I was at a critical point where the lack of sleep, pain from surgery and pain from cracked nipples was so bad, I broke down.

I begged for something for him, I begged for food because I knew he was so hungry and not getting anything from me. I begged for nipple relief. I am not sure why, but I still hadn’t had a proper lactation consultant stop by.

Hungry and unsettled after nursing.

My nurse finally put in a request for a lactation consultant to see me. It was rather late at this time, and I begged the nurse to please help my baby and get him some formula. She looked at me as if I had committed the biggest sin. She kept making me try before finally (after two hours of begging) she had donor milk on hand. GREAT! Finally, he can get some food. This was now into the late night and my husband and I were so tired from him crying all night that we were done. He passed out. The nurse finally took pity on us and took him to the nurse’s station for about 2 hours. She was the silver lining, even after giving me such a hard time before.

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My Baby Went Through Hell And Suffered Needlessly From Starvation

Jenn T.

My son was born on February 18, 2019. He was 6 lbs 10 oz and had a little trouble regulating his temperature at birth. But after 24 hours, he was okay. I was always told breast was the best way to go. I never breastfed my 9 year old so this was my first experience with it.

My son had latching issues at first and it caused major pain and bleeding. But after latch correction and using nipple shields, the pain dissipated. When we left the hospital, my son weighed 6 lbs (9.3 percent weight loss) and at his checkup the next day, he had gained half an ounce.

At home I was feeding straight from my breasts, every time. My son was content and seemed happy.  He smiled and was great the entire time, so I thought. I didn’t pump to see how much milk I had because the hospital where I delivered told me pumping in the first 6 weeks could cause confusion for the baby with latching.

Now fast forward to when he was 21 days old. He had his three week checkup and he was extra sleepy that morning. When we got to the doctor, and not only did he lose weight, (down to 5.5 lbs), but he also had a temperature of 92 degrees. He was hypothermic! So they sent us urgently to the children’s hospital in Nashville. Continue reading

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Fed is Best Foundations Statement to USDA Healthy People Goals 2030

Christie del Castillo-Hegyi, M.D.

From December 2018 to January 2019, the Secretary’s Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2030 published the proposed Healthy People 2030 Objectives for public comment. Of note, the proposed Healthy People 2030 objectives saw a marked change from the 2020 objectives, namely a reduction of the breastfeeding objectives from 8 goals to one, namely, “Increase the proportion of infants who are breastfed exclusively through 6 months” (MICH-2030-15 ). Among the objectives that were dropped from the list were:

  1. MICH-23 – Reduce the proportion of breastfed newborns who receive formula supplementation within the first 2 days of life.
  2. MICH-24 – Increase the proportion of live births that occur in facilities that provide recommended care (i.e. Baby-Friendly Hospital Initiative-certified hospitals) for lactating mothers and their babies.
Healthy People 2020 ObjectivesBaseline (%)Target (%)
Increase the proportion of infants who are breastfed (MICH 21)
Ever74.081.9
At 6 months43.560.6
At 1 year22.734.1
Exclusively through 3 months33.646.2
Exclusively through 6 months14.125.5
Increase the proportion of employers that have worksite lactation support programs (MICH 22)2538
Reduce the proportion of breastfed newborns who receive formula supplementation within the first 2 days of life (MICH 23)24.214.2
Increase the proportion of live births that occur in facilities that provide recommended care for lactating mothers and their babies (MICH 24)2.98.1
We applaud the removal of the last two objectives as patient safety issues have emerged from those two objectives, namely increased rates of neonatal jaundice, weight loss, hypoglycemia and dehydration readmissions. We have submitted the following statement regarding the Healthy People Goals for 2030 requesting for a revision of the current proposed objective and the addition of two new objectives.

Exclusive breastfeeding at discharge is a major risk factor for severe jaundice and dehydration. Both conditions can require in-hospital treatment and can result in permanently impaired brain development. Photo Credit: Cerebral Palsy Law

 

Revision of MICH-2030-15 calling for “Increase in the proportion of infants who are exclusively breastfed from birth to 6 months” to the following:

Increase the proportion of infants who are primarily breastfed through 4-6 months who have received sufficient nutrition to ensure optimal growth and brain development and to prevent feeding complications (e.g. hyperbilirubinemia, hypernatremia, dehydration, excessive weight loss, hypoglycemia and failure-to-thrive).

We have requested the following additions to the 2030 Healthy People Goals:

New Proposed Objective #1: Reduce the proportion of infants who require treatment and/or extended or repeat hospital admission for insufficient feeding-related hyperbilirubinemia, hypernatremia, dehydration, excessive weight loss, hypoglycemia and failure-to-thrive.

New Proposed Objective #2: Increase the proportion of parents who have made the informed choice to partially- or exclusively-feed formula to provide safe and sufficient nutrition to their infants to prevent feeding complications (e.g. hyperbilirubinemia, hypernatremia, dehydration, excessive weight loss, hypoglycemia and failure-to-thrive) and optimize growth and brain development.

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Breast Milk Production in the First Month after Birth of Term Infants

by Christie del Castillo-Hegyi, M.D.

One of the most important duties of the medical profession is to make health recommendations to the public based on verifiable and solid evidence that their recommendations are safe and improve the health of nearly every patient, most especially if the recommendations apply to vulnerable newborns.  In order to do this, major health recommendations require extensive research regarding the safety of the real-life application of the recommendation at the minimum.

Multiple health organizations recommend exclusive breastfeeding from birth to 6 months as the ideal form of feeding for all babies under the belief that all but a rare mother can exclusively breastfeed during that time frame without underfeeding or causing fasting or starvation physiology in their baby. In order to suggest that exclusive breastfeeding is ideal for all, if not the majority of babies, one would expect the health organizations to have researched and confirmed that all but a rare mother in fact produce sufficient milk to meet the caloric and fluid requirements of the babies every single day of the 6 months without causing harmful fasting conditions or starvation. There have been few studies on the true daily production of breast milk in breastfeeding mothers.  Only two small studies quantified the daily production of exclusively breastfeeding mothers including a study published in 1984, which measured the milk production of 9 mothers, and one in 1988, which measured it in 12 mothers.  After extensive review of the scientific literature, it appears the evidence that it is rare for a mother to to not be able to produce enough breast milk to exclusively breastfeed for 6 months is no where to be found. In fact the scientific literature has found quite the opposite.

In November 2016, the largest quantitative study of breast milk production in the first 4 week after birth of term infants was published in the journal Nutrients by human milk scientists, Dr. Jacqueline Kent, Dr. Hazel Gardner and Dr. Donna Geddes from the University of Western Australia. They recruited a convenience sample of 116 breastfeeding mothers with and without breastfeeding problems who agreed to do 24 hour milk measurements through weighed and pumped feedings between days 6 and 28 after birth and were loaned accurate clinical-grade digital scales to measure their milk production at home. The participants test weighed their own infants before and after breastfeeding or supplementary feeds and recorded the amounts of breast milk expressed (1 mL = 1 gram). All breast milk transferred to the baby, all breast milk expressed and all supplementary volumes were recorded as well as the duration of each feed.

These were the results…

13 mothers perceived no breastfeeding problems while 103 mothers perceived breastfeeding problems.  The most common problem was insufficient milk supply (59 mothers) followed by pain (11 mothers),  and positioning/attachment (10 participants).  75 mothers with reported breastfeeding problems were supplementing with expressed breast milk and/or infant formula.

Of the mothers with reported breastfeeding problems, their average weighed feeding volumes were statistically lower than the mothers who did not report breastfeeding problems with an average feed volume of 30 mL vs. 63 mL in the mothers who reported no breastfeeding problems (p<0.001).  The daily total volume of breast milk they were able to transfer (or feed directly through breastfeeding) were also statistically lower than those who did not report breastfeeding problems. The moms without breastfeeding problems transferred an average of 693 mL/day while those that reported breastfeeding problems transferred an average of 399 mL/day (p<0.001).  The study defined 440 mL of breast milk a day as the minimum required to safely exclusively breastfeed. This is the amount of breast milk that, on average, would be just enough to meet the daily caloric requirement of a 3 kg newborn (at 70 Cal/dL and 100 Cal/kg/day). Babies of mothers with no reported breastfeeding problems were statistically fed more milk than those with breastfeeding problems, 699 mL vs. 567 mL per day (p = 0.007). All 13 mothers who perceived no breastfeeding problems produced and transferred more than the study’s 440 mL cut-off as the volume required to be able to exclusively breastfeed.  What this data shows is that a mother’s perception of breastfeeding problems is associated with actual insufficient volume of breast milk fed to her child.

Based on the 440 mL cut-off for “sufficient” breast milk production, some mothers who report their babies not getting enough in fact produced more than 440 mL.  However, since 440 mL is the amount of milk that is needed to meet the minimum caloric requirement of a 3 kg newborn, if the mother had a newborn weighing > 3 kg as they would expect to be past the first days of life if growing appropriately, many of the mothers reporting breastfeeding problems may be producing more than 440 mL but are still in fact producing less than the amount to keep their child satisfied and fed enough to grow.  A supply of 440 mL would actually be just enough milk to cause a 3 kg newborn to be diagnosed to fail to thrive at 1 month since they would not gain any weight if fed this volume of milk. Failure to thrive has known long-term consequences including lower IQ at 8 years of age.  So their conclusion that some mother’s perception of insufficient breast milk may in fact be inaccurate as a volume of 440 mL is in fact “not enough” for most newborns weighing > 3 kg.

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Neonatal Nurse Practitioner Speaks Out About The Dangerous And Deadly Practices Of The BFHI

by Christine K.

When the Fed Is Best Foundation was launched two years ago, a few nurses sent us messages about their experiences working in a Baby-Friendly Hospital Intiative (BFHI) hospital. They shared common concerns about watching exclusively breastfed babies crying out in hunger from not enough colostrum while being refused supplementation just so that high exclusive breastfeeding rates were met. Two years later, we now receive messages from nurses, physicians, lactation consultants and other health professionals, regularly. They express their concerns while asking for patient educational resources. They tell us their stories and they need support and direction on what to do about unethical and dangerous practices they are forced to take part in. We collected their stories and are beginning a blog series on health professionals who are now speaking out about the Baby Friendly Health Initiative (BFHI) and the WHO Ten Steps of Breastfeeding.

Christine K. is a Neonatal Nurse Practitioner currently working in a BFHI Hospital with 25 years of experience. She has worked in both BFHI and non-BFHI hospitals and talks about her concerns about taking care of newborns in the Baby-Friendly setting.

Regarding Unsafe Skin-To-Skin Practices

In BFHI facilities, skin-to-skin is mandated. The protocol calls for skin-to-skin at birth, for the first hour, then ongoing until discharge. New mothers are constantly told that it is important for bonding, for breastfeeding, for milk production and for temperature regulation of the newborn. Baby baths are delayed for skin-to-skin time and nurses are required to document in detail the skin-to-skin start and end times. There is no education on safety regarding skin-to-skin time, only that it is to be done. I have been responsible for the resuscitation of babies who coded while doing skin-to-skin. One died, and the other baby is severely disabled. Mothers are not informed of the risks of constant and unsupervised skin-to-skin time. Mothers have complained to me that they felt forced to do skin-to-skin to warm up their cold or hypoglycemic infant because they are told skin-to-skin time will help their infant resolve these issues when in fact it doesn’t. There is also no assessment of the mother’s comfort level with constant skin-to-skin. It’s very discouraging to hear staff say things like, “That mother refused to do skin-to-skin,” like it was a crime or an act of child abuse. The judgement is harsh on mothers who fail to follow the protocol. I have noticed that partners are pushed to the side, especially in the first hour of life, not being able to hold their newborn, due to this strict policy. Their involvement has been discounted in the name of the exclusive breastfeeding protocol. Continue reading

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Nurses Are Speaking Out About The Dangers Of The Baby-Friendly Health Initiative

When the Fed Is Best Foundation was launched two years ago, a few nurses sent us messages  about their experiences working in a BFHI hospital. Some of the nurses felt comfortable speaking out because they left their jobs or retired early, as they did not want to be part of the restrictive breastfeeding policies that were implemented. They shared common concerns of watching exclusively breastfed babies being refused supplementation,while babies were crying out in hunger from not enough colostrum which resulted in NICU admissions.

Two years later, we now receive messages from nurses, physicians, LC’s and other health professionals, regularly.  They express their concerns while asking for help and for patient resources. They tell us their stories and they need support and direction of what to do about unethical and dangerous practices they are forced to practice. We collected their stories and are beginning a blog series of health professionals who are now speaking out about the Baby Friendly Health Initiative and the WHO Ten Steps of Breastfeeding. Continue reading

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“Is Baby-Friendly Safe?”: BFHI Safety Issues Discussed at National Neonatology Conference

Full video presentation available at Contemporary Forums Online.

Las Vegas, Nevada — On September 6, 2018, the national neonatology conference, “The Fetus and Newborn Conference” was held in Las Vegas, Nevada. Among the speakers was Jay Goldsmith, M.D., Neonatologist and Professor of Pediatrics at Tulane University, Member of the American Academy of Pediatrics Section on the Fetus and Newborn who gave a talk entitled, “Is Baby-Friendly Baby Safe?”

In the talk, he discussed the case of an Oregon woman who has filed an $8.6 million lawsuit against her hospital, Portland Adventist Medical Center, and a nurse who cared for her and her baby after accidentally suffocating her newborn after falling asleep with him in her hospital bed. According to the Washington Post, she had delivered her son by cesarean section a few days earlier and was given narcotic pain medication and sleep aids. A nurse gave her newborn to her while she was still drowsy and groggy to breastfeed in her hospital bed. About an hour after being left to breastfeed, the baby was found gray, not breathing with compromised vital signs in the mother’s arms after which he was rushed to the nursery. The baby received CPR and was put on life support but the child sustained severe and permanent brain injury. He ultimately died at 10 days of age. Continue reading

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Response to Baby-Friendly USA Regarding Rates of Hyperbilirubinemia Among Exclusively Breastfed Newborns

Christie del Castillo-Hegyi, M.D. and Jody Segrave-Daly, RN, IBCLC

We at the Fed Is Best Foundation give mothers across the globe a platform to tell their stories about how their babies suffered needlessly because they were denied information and supplementation for their hungry babies while under the care of the Baby-Friendly Hospital Initiative/WHO Ten Steps to Successful Breastfeeding protocol. Our Foundation has grown rapidly and demands significantly more time than we currently have because we are a 100% volunteer organization.  We are inundated with messages from mothers, health professionals and media on a daily basis. We try very hard to prioritize what we can do collectively, every single day. Our first priority is to respond to mothers in crisis who contact us needing assistance on how to safely feed their distressed breastfed baby because they were not educated on appropriate supplementation. Baby Friendly USA (BFUSA) found time to critique our interpretation of studies and written materials, so we were forced to take time away from mothers to update written materials and clarify our interpretations. Our goal is to be completely transparent and we have provided our detailed response below with corrections and clarifications given publicly available published data. If there have been errors in interpretation of published information, then we go back to the original published data to provide better data for the public, which we have done below. We believe we have a responsibility to inform parents, the public, medical insurance companies and BFHI hospitals about the risks of exclusive breastfeeding when insufficient. We believe parents deserve to know that the BFHI has an exclusive breastfeeding (EBF) threshold mandate to meet if the hospital wants to remain credentialed. The mandate results in tens of thousands of newborn admissions every year in the U.S. alone, which we chronicle on our page. For the safety of infants across the globe, we will continue to provide education on how to recognize serious complications of exclusive breastfeeding and how every parent can prevent them.

Starvation jaundice (hyperbilirubinemia) of the newborn is defined as abnormally high bilirubin in a newborn who loses >8-10% weight. It is caused by insufficient elimination of bilirubin due to insufficient caloric intake from exclusive breastfeeding in the first week of life. This well-established phenomenon has been discussed by neonatologist Dr. Lawrence Gartner, who is listed as a Director on the Baby-Friendly USA website, in a lecture given to lactation consultants (not just physicians and nurses as stated by BFUSA) at a 2013 California Breastfeeding Conference, previously posted on their website. This public lecture was provided to educate lactation consultants regarding dangerous levels of jaundice that can occur in previously healthy breastfed babies that result from inadequate intake of calories from exclusive breastfeeding. Under Fair Use laws, dissemination of educational material for non-profit educational purposes is protected and we were subsequently asked to post the full lecture by Dr. Gartner via email. The Academy of Breastfeeding Medicine jaundice protocol acknowledges that exclusively breastfed newborns are at higher risk of hyperbilirubinemia from insufficient milk intake (“suboptimal intake”) and excessive weight loss. The vast majority of newborn hyperbilirubinemia is caused by starvation jaundice. Their protocol also states that 98% of kernicterus, or the most severe form of brain injury from jaundice, occurs in breastfed newborns. Nearly all of starvation jaundice can be prevented with timely and adequate supplementation. Nearly all newborns with starvation jaundice show signs of poor feeding including excessive crying and frequent, unsatisfied nursing or lethargy before they develop levels of hyperbilirubinemia that result in impaired brain development. While BFUSA has not previously denied the increased risk of hyperbilirubinemia in breastfed newborns, they have not routinely disclosed them to parents or subscribing hospitals, which has the unfortunate effect of causing hospitalizations that would have been prevented by supplementing a crying underfed newborn. Unfortunately, many parents and health professionals are taught that the signs of poor feeding including crying and hours of unsatisfied nursing are normal, widely known as the “Second Night Syndrome.” These unfortunately are also the earliest signs of other complications like acute bilirubin encephalopathy, kernicterus, hypernatremic dehydration and hypoglycemia, all known causes of brain injury and permanent disability, which can occur if those signs are overlooked as normal and supplementation is avoided in order to meet the goal of exclusive breastfeeding.

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