Dear Colleague and Parent:
My name is Christie del Castillo-Hegyi and I am an emergency physician, former NIH scientist, with a background in newborn brain injury research at Brown University, and mother to a 5-year-old child with autism. I am writing you because my child fell victim to newborn jaundice due to insufficient milk production in the first days of life. As an expectant mom, I read all the guidelines on breastfeeding my first-born child. Unfortunately, following the guidelines and our pediatrician's advice resulted in my child going 4 days with absolutely no milk intake requiring ICU care. He was subsequently diagnosed with multiple neuro-developmental disabilities. Being a physician and scientist, I sought out peer-reviewed journals to explain why this happened. I found that there is ample evidence showing the links between neonatal jaundice and developmental disabilities. I wish to explain to you how I believe this could apply to my son and the many children whose care you are entrusted with.
My son was born 8 pounds and 11 ounces after a healthy pregnancy and normal vaginal delivery. He was placed directly on my chest and was nursed immediately. He was nursed for 20-30 minutes every 3 hours. Each day of our stay in the hospital, he was seen by the pediatrician as well as the lactation consultant who noted that he had a perfect latch. He produced the expected number of wet and dirty diapers. He was noted to be jaundiced by the second day of life and had a transcutaneous bilirubin of 8.9. We were discharged at 48 hours at 5% weight loss with next-day follow-up. We were told by the lactation consultant before discharge that he would be hungry and we were instructed to just keep putting him on the breast. Upon getting home, he became fussy and I nursed him longer and longer into the night. He cried even after nursing and latched back on immediately. He did not sleep. By the next morning, he stopped crying and was quiet. We saw our pediatrician at around 68 hours of life (end of day 3). Despite producing the expected number of wet and dirty diapers, he had lost 1 pound 5 ounces, about 15% of his birth weight. At the time, we were not aware of and were not told the percentage lost, and having been up all night long trying to feed a hungry baby, we were too exhausted to figure out that this was an incredible amount of weight loss. He was jaundiced but no bilirubin was checked. Our pediatrician told us that we had the option of either feeding formula or waiting for my milk to come in at day 4 or 5 of life. Wanting badly to succeed in breastfeeding him, we went another day unsuccessfully breastfeeding and went to a lactation consultant the next day who weighed his feeding and discovered that he was getting absolutely no milk. When I pumped and manually expressed, I realized I produced nothing. I imagined the four days of torture he experienced and how 2 days of near-continuous breastfeeding encouraged by breastfeeding manuals was a sign of this. We fed him formula after that visit and he finally fell asleep. Three hours later, we found him unresponsive. We forced milk into his mouth, which made him more alert, but then he seized. We rushed him to the emergency room. He had a barely normal glucose (50 mg/dL), a severe form of dehydration called hypernatremia (157 mEq/L) and severe jaundice (bilirubin 24 mg/dL). We were reassured that he would be fine, but having done newborn brain injury research, knowing how little time it takes for brain cells to die due to hypoglycemia and severe dehydration, I did not believe it, although I hoped it.
At 3 years and 8 months, our son was diagnosed with autism spectrum disorder with severe language impairment. He has also been diagnosed with ADHD, sensory processing disorder, low IQ, fine and gross motor delays and a seizure disorder associated with injury to the language area of the brain. Since my child's diagnosis, I have been researching the scientific literature on breastfeeding insufficiency, newborn starvation, brain injury and developmental disabilities for two years. In addition, I have collected the breastfeeding stories of over 30,000 women through social media.
In the September, 2015 issue of Hospital Pediatrics
, an article was published describing 11 exclusively breastfed newborn babies who developed profound hypoglycemia between the second and fifth day of life from insufficient breast milk intake. The child described in the body of the article was a healthy full-term baby who presented just like my son. He was seen on the third day of life at his pediatrician's office. Despite that, he was found on the fourth day of life lethargic and unable to feed. He had lost 10% of his birth weight and had a low glucose of 20 mg/dL (normal > 47 mg/dL). This child was given IV glucose after which he developed a seizure. They obtained a brain MRI which showed extensive areas of injury to almost the entire brain. In addition to this child, 10 other healthy term newborns were identified to have developed hypoglycemia from insufficient breastfeeding as well. They were found lethargic, seizing, hypothermic and/or not breathing. 5 out of the 6 MRIs obtained in these babies showed diffuse injury to the brain in varying patterns. They subsequently developed long-term neurological disabilities including seizure disorders, motor weakness, visual impairment and feeding difficulties requiring speech therapy.
The answer to the epidemic of developmental disabilities we are seeing may be found in this vulnerable period. The risk factors for neurological disabilities in children all have to do with brain injury caused by loss of oxygen, circulation and glucose delivery to the brain. These include pre-eclampsia, intrauterine growth retardation and prematurity, which are caused by poor function of the placenta and decreased circulation to the baby. Hypoglycemia, umbilical cord prolapse, nuchal cord (cord wrapped around the neck), fetal distress, low Apgar scores, respiratory distress and other labor complications, events that all cause perinatal brain injury also cause long-term neurological disabilities. Although there are many causes of newborn brain injury that we have no control over, we have control over whether or not a child is fed enough for all their neurons to survive. I believe we may be inducing hypoglycemic brain injury to many newborns by asking mothers who may not be producing sufficient milk for their newborn's physiologic need to exclusively breastfeed. We are potentially putting ourselves at odds with the protective natural instinct to respond to a baby's cry by telling mothers that their colostrum is enough (which for many it may not be) and by making them fear failure by giving their child supplementation when they need it.
My child's story is not rare. In a study of 280 mother-baby dyads
, 22% of women experienced delayed onset of copious milk, or lactogenesis II, which put her child at 7-fold increased risk of excessive weight loss greater than 10%. This means more than 1 in 5 newborns are at risk of starvation-related complications if exclusively breastfed from birth. In another study
, it has been found that 10% of well-monitored exclusively breastfed babies develop hypoglycemia of less the 40 mg/dL within the first 48 hours. This incidence was even higher in babies born to first-time mothers as 23% developed hypoglycemia. This level of hypoglycemia has been shown in other studies to result in brain injury on MRI and long-term declines in cognitive function. One study showed that a glucose of less than 46 mg/dL within the first 24 hours of life was associated with a 3.7-fold increased risk of brain injury on MRI and a 4.8-fold increased odds of lower motor, cognitive and language scores at 1 year of age. This cognitive impairment persists as evidenced by another study of 1395 newborns showing that newborns who develop transient hypoglycemia of less than 40 mg/dL had a 50% reduction in their fourth-grade achievement test scores in literacy and math. Even a glucose less than 45 mg/dL resulted in a 38% and 22% reductions in those scores respectively. The current standard of care tolerates a glucose between 40 and 45 mg/dL within the first 4 hours of life when there is no evidence that neurons have greater tolerance for hypoglycemia in the first hours than they do at any other time.
I hope you feel the same sense of urgency that I do. Since we received our diagnosis, I have come to know of 40 other mothers, including pediatricians, other doctors, nurses and lactation consultants who experienced the same story of insufficient feeding in the newborn period. All of them have children with long-term neurodevelopmental impairments including autism spectrum disorder, ADHD, sensory processing disorder, severe speech delay, seizure disorders, motor impairments and mental retardation. While the literature cites poor education in breastfeeding as the cause of these starvation-related complications, in my research of breastfeeding mothers, it is the most
educated in breastfeeding that are at highest risks. The least educated will respond to a baby's cry by offering a bottle. The mothers that are most educated in breastfeeding are the ones who have been taught that offering just one bottle will ruin her breastfeeding and potentially harm her child. I have learned that this is a distortion of reality created by breastfeeding education to pressure mothers to exclusively breastfeed that can put her child's life at risk.
I am writing to let you know I believe the current practice guidelines are dangerous. My son suffered an incredible amount of weight loss by the third day, which is often when mothers produce milk. How many newborns are experiencing this same fate? To date, there are no rigorously done studies on the safety of newborn weight loss and exclusive breastfeeding before lactogenesis II on the newborn brain. In fact, a study has shown that exclusive breastfeeding at discharge is associated with an 11-fold higher risk of rehospitalization
for underfeeding and dehydration. In addition, the Academy of Breastfeeding Medicine jaundice protocol
clearly states that 10-18% of exclusively breastfed baby develop starvation jaundice from insufficient milk intake, a fact disclosed by no breastfeeding manual.
I would like to advocate for a patient safety initiative to increase monitoring and supplementation to prevent brain injury in all exclusively breastfed newborns as described by the following:
1) Mothers should be instructed on how to manually express to confirm presence of milk.
2) Twice daily weighing for exclusively breastfed newborns in the hospital and at home as it has been shown that the least-fed newborns can lose the maximum recommended weight loss of 7% within the first 24 hours. This practice should be continued at home until breastfeeding meets the child's full metabolic requirement as signaled by the onset of daily weight gain. The 7% weight loss threshold should be provided to the mother to help signal the need for supplementation in the hospital and at home.
3) Universal daily transcutaneous bilirubin checks and glucose monitoring for exclusively breastfed newborns before the onset of daily weight gain as the scientific literature has now identified them as a high-risk population for hypoglycemia. The physical exam is insufficient to rule out hypoglycemia and pathological hyperbilirubinemia. Any inconsolable child should also have a glucose check as this is an often-missed sign of hypoglycemia. Supplementation with breast milk or formula should occur immediately at a glucose level less than 50 mg/dL in order to provide a margin of safety for the baby. Supplementation should also be offered for bilirubin levels exceeding 15 mg/dL or any level considered high risk on the bilirubin nomogram.
4) Pre- and post-breastfeeding weights after lactogenesis II to measure the amount of milk transferred to the baby, which should be around 2 ounces per feed.
5) Next day after discharge follow-up with pediatricians and universal bilirubin and glucose checks in the office. Follow up within 48 hours as allowed by the current guidelines is enough time to disable an underfed child.
6) I advocate for mothers to be informed of the possibility that her child can become dehydrated, jaundiced and hypoglycemic from insufficient breast milk intake and that these conditions can cause brain injury. Signs of this are a child that is not sleeping or crying repeatedly after breastfeeding as well as nursing near-continuously. Lethargy, poor feeding, seizures, hypothermia and bradycardia are late signs that suggest the presence of profound brain injury from near-complete glucose deprivation to the brain. Lethargic hypoglycemic babies deserve a brain ultrasound (at day 1 and day 7 after diagnosis to increase sensitivity) or brain MRI to provide vital information to parents so that they can closely monitor their development and obtain early intervention as needed.
7) Every mother should be educated on supplementation after nursing in order to continue the stimulation needed to promote milk production in case the need for supplementation arises. If a child is hypoglycemic, greater than 7% below the birth weight, hyperbilirubinemic, hypernatremic or crying inconsolably out of hunger, supplementation can be offered 15 mLs at a time as the newborn stomach has been in fact measured to be 20 mL in size at birth
, much larger than commonly taught to mothers and health professionals. Supplementation should be offered until a child's laboratory markers are corrected and the child is no longer in distress. A child's brain will not wait for food. Once the child is adequately fed, the breastfeeding may then be evaluated to identify the cause of underfeeding. Supplemented breastfeeding is a valid choice as NO BENEFIT of exclusive breastfeeding justifies the risk of life-long disability caused by hypoglycemic brain injury. Any mother sent home without a supplementation plan is being sent home to potentially starve and disable her child if her milk does not arrive on time.
Mothers are taught by breastfeeding manuals that they will uniformly be able to produce enough milk for their baby's needs and will feed them near-continuously for weeks without question if their doctors and lactation consultants tell them not to give formula. But as you have witnessed as a matter of routine, breastfeeding jaundice is very common and mothers do not uniformly produce enough milk for their babies' needs. The learned wisdom of grandparents who know instinctively the sound of a hungry baby is being supplanted by breastfeeding manuals that cannot teach that sound to the new parent. If you observe non-Western cultures all around the world, babies are given pre-lacteal feeds or milk through wet nurses when mother's milk is not enough in the first days of life because instinctively, we as a species protected our newborns by responding to their hungry cry. Thousands of years of evolution have wired mothers to respond to this cry and we are interfering with a biologically protective instinct by telling mothers that their child is getting enough when it is apparent to them that they are not. Babies get admitted to the ICU lethargic, jaundiced and dehydrated every day because their mother did not know it was possible to have insufficient milk. The scientific literature has shown that 1-6% of breastfed babies all around the world are rehospitalized for complications associated with exclusive breastfeeding in the first days of life. That means millions of babies have been hospitalized for starvation since the 1991 publication of the Baby-Friendly Hospital Initiative which codified this protocol. The Baby-Friendly Hospital Initiative and the WHO breastfeeding protocol protects the breastfeeding more than it protects the baby and countless babies have endured days, weeks and even months of hunger in order to meet its goals.
The time for magical thinking has ended. Breastfeeding education is based on many premises not consistent with reality. No time in the history of this planet have we allowed babies to cry out for milk for as long as we tolerate for the purpose of breastfeeding. The first law of nature is and has alway been that Fed is Best. Many parents are led to harm their own babies because of what they have been taught about breastfeeding. As you can see, if such a severe case of jaundice and dehydration can occur to two physicians taking home their first-born son, it can happen to anyone.
To all doctors and parents, my message is simple. Feed your baby. Provide your baby its physiologic needs every minute, including the days before milk production. The only person who knows what a newborn needs is that newborn. The accidental starvation of a newborn child is a tragedy by any definition. We are allowing newborns to receive less than their nutritional requirement and telling parents that they are doing what is best for their children. We must be certain an infant is actually getting fed by every available mean. I hope you join me in informing your colleagues, friends and family of the data and make changes to your practice. Please feel free to share this letter with whomever you wish.
Christie del Castillo-Hegyi, MD
Here's the dropbox link leading to a folder that has the CDC response letter and all the articles that inform that above letter:https://www.dropbox.com/sh/vb79pfpzr81mark/AACOwDgxIndclju2doJACyH-a?dl=0
Note: Every hospital has seen their share of babies who were underfed and suffered complications from insufficient exclusive breastfeeding but this story happened at Presbyterian Hospital Downtown in Albuquerque, NM. I wrote them to alert them about the patient safety issue caused by their care of exclusively breastfed babies assuring them I had no intention of suing. Instead of taking steps to decrease complications, they chose to increase the rates of complications by getting accredited as a Baby-Friendly institution. Mothers, BFHI institutions while increasing exclusive breastfeeding at discharge, have not been shown to increased overall breastfeeding rates. Furthermore, their restrictive policies on supplementation increase rates of complications to newborns including hyperbilirubinemia requiring phototherapy, hypoglycemia and hypernatremia, all conditions that can cause irreversible brain injury. The primary quality measure is exclusive breastfeeding at discharge, NOT whether a newborn is safe from complications or hospitalization. Protect your babies.