Dear Colleague and Parent:
My name is Christie del Castillo-Hegyi and I am an emergency physician, former NIH scientist, with a background in neonatal ischemic brain injury research at Brown University, and mother to a 4-year-old child with autism. I am writing you because my child fell victim to newborn jaundice due to insufficient milk production during the first days of life. As an expectant mom, I read all the current 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. At 3 years and 8 months, he was diagnosed with Autistic Spectrum Disorder. 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 autism. 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 and had lost 1 pound 5 ounces at day 3 of life, about 15% from birth weight. At the time, we were not aware of and were not told the percentage lost, only the weight 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 for our child. 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. He was also jaundiced but his bilirubin was not checked. Wanting badly to succeed in breastfeeding him, we went another day unsuccessfully breastfeeding and went to a lactation consultant the next day who weighed him before and after breastfeeding and discovered that he was getting absolutely nothing from me. When I pumped, I realized I was not producing any milk. It was devastating to find out that he had starved for 4 days and that being up all night for 2 days in a row was a sign that my child was in distress and not getting food. We fed him formula after that visit and he finally fell asleep. When we got him up from his nap, he was unresponsive and seized in my husband’s arms. My husband forced milk into his mouth, which made him more alert, then we took him to the pediatric emergency room. His bilirubin came back at 26 and his sodium was 155 and his glucose was in the mid-30s. He stayed in the ICU for 5 days. We were reassured that we would have nothing to worry about, but having done neonatal brain injury research, knowing how little time it takes for neurons to die in response to sustained hypoglycemia, I did not believe it, although I hoped it.
At 3 years and 8 months, after over a year of worrying about his speech delay, our son was diagnosed with autism spectrum disorder. I then thought back to his jaundice and did my own research. I found that in a rare true prevalence study that included all children born in Denmark from 1994 to 2004 (n=733,826), newborns who developed jaundice had a 67% increased risk of developing autism. In a meta-analysis of 13 case-control studies, jaundice was associated with a 43% increased risk of autism. The largest recorded risk of developing autism associated with jaundice is 6.9 times that of babies without jaundice. What this data shows is not only jaundice associated with autism but that regardless of treatment with bilirubin lights, developing the diagnosis alone can put a child at risk. It may be that jaundice is in fact a marker of starvation and by the time it is apparent, the injury has already occurred. This data may suggest that the term "physiologic jaundice" may be false and may be a term that resulted from lack of data rather than lack of harm.
Looking back at the literature at risk factors for autism, I believe the answer to the epidemic of autism is simple. The very first cognitive functions of the newborn brain are the ability to make eye contact and to socially bond, functions essential for survival. These are exactly the core deficits of autism. I believe autism is caused by injury to the brain during the perinatal period. Other risk factors for autism in the literature include pre-term birth, multiple surrogates of fetal hypoxia like low Apgar scores, fetal distress, cesarean delivery, threatened abortion and labor complications, all of which point to brain injury as a cause of autism. Markers of insufficient peripartum nutrition like low birth weight and even early slow growth after birth are associated with autism. In many studies, older parental age, higher education and residing in areas of higher affluence in Los Angeles and San Francisco, both factors that may lead to strict adherence to exclusive breastfeeding are risk factors for autism. It has also been found in the literature that mothers over 30 produce less breast milk than younger mothers. Although there are many causes of autism that we have no control over, I believe we are regularly inducing hypoglycemia and brain injury to newborns by asking mothers who may not be producing sufficient milk for the newborn's physiologic needs to exclusively breastfeed. I believe my son was in distress by the third day and I ignored it because I wanted to do what I thought was best for him at the time. Thousands of mothers in the Western world are doing the same at this exact moment, in the hospital and at home. We are potentially putting ourselves at odds with a protective natural instinct to respond to a baby's cry by telling mothers that their colostrum is enough (which it is often not) and by making them fear failure by giving their child formula when they need it.
I hope you feel the same sense of urgency that I do. Since we received our diagnosis, I have come to know of 23 other mothers, including pediatricians, other doctors and nurses, who experienced the same story of insufficient feeding in the newborn period. Three others had children who experienced hypoxia through aspiration, one being born with zero Apgars after prolonged fetal distress during delivery. All of them have children with autism spectrum disorder or severe speech delay. I feel it is my duty to get the message out to as many people as possible. I have contacted the CDC and they are currently investigating this phenomenon. (A link to their letter is attached below.) But I believe the data is already out there.
Please feel free to share this letter with colleagues. 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 the same fate? There are no studies in the scientific literature that have tested the risk of autism in newborns who lose weight due to prolonged fasting while being exclusively breastfed in the first days of life. The current standard that tolerates 10% weight loss in the first 10 days of life is backed up by absolutely no scientific data looking at safety to the newborn. Ultimately, when a newborn is crying continuously, it is signaling that a physiologic need is not being met. I would like to advocate for a patient safety initiative asking hospitals to weigh exclusively breastfed babies before and after breastfeeding while in the hospital so that mothers know what they are providing with each nursing session and so that health-care providers can identify the mothers who are most at risk of underfeeding after discharge. Exclusively breastfed babies are the only patients in the hospital for which we have no information about the quality and quantity of the food they receive. As you can see, if such a severe case of dehydration and hyperbilirubinemia can occur to two physicians taking home their first child, it can happen to anyone. It has been estimated that as many as 1 in 20 mothers have true milk insufficiency due to breast hypoplasia, post-partum hemorrhage and other factors. I also advocate for next day after discharge follow-up with pediatricians with universal bilirubin checks for exclusively breastfed babies, especially before lactogenesis. I know of mothers whose first follow-up appointment was one week out from birth. This mother's child also ended up in the ICU with jaundice and is now diagnosed with severe autism. Also, the teaching of jaundice above the chest as a reliable sign of benign jaundice is antiquated and proven to be incorrect in the literature and the decision to check bilirubin levels should not be based on level of jaundice.
In addition, I advocate for mothers to be informed of the possibility that their child can become dehydrated, underfed and jaundiced from insufficient breast milk intake. Signs of this are a child that is not sleeping or crying repeatedly after breastfeeding then latching on again and most importantly, breasts that are not producing milk when pumped or a child not gaining weight after each feeding. Mothers are going home believing that they will uniformly be able to produce enough colostrum for their babies needs and will feed them day and night for weeks if necessary without question if their doctors and lactation consultants are telling them they are getting enough and that they should not 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. Mothers deserve to know what they are feeding their child. The current recommendations can be summed up by the words of a lactation consultation who advised a friend's daughter with the following: "Your child will never learn to breastfeed properly if you give her a bottle." This mother went on to feed her daughter day and night for two weeks until a pediatrician intervened when she was found to be underweight. Exhausted and discouraged, this mother stopped breastfeeding altogether.
With that, I also advocate for more liberal use of supplementation before lactogenesis and that we scrutinize the science behind the current guidelines of supplementation at a threshold of 7-10% weight loss. The only data that supports this practice is data that supplementation may reduce breastfeeding duration, but its effects on newborn development have not been studied. The daily caloric requirement of a newborn is publicized as 110 kcal/kg/day. Colostrum has been studied as having 60 kcal/100 mL. To meet a one-day-old child's requirement, he must receive 2.8 oz/lb/day of colostrum. A 7 lb child would need 19.6 oz per day or 2.5 oz per feed every 3 hours. Very few women produce this. We accept a weight loss of 7-10% in the first few days of life based on a 1984 study measuring weight and milk production data of 9 women and have assumed that this is normal, physiologic and advantageous. For every creature on earth, weight loss occurs when the intake of calories and fluid does not meet the minimum metabolic requirement of that organism. If we accept this weight loss as normal, we accept a different definition of starvation for a one-day-old child as we do for ourselves. How many of these newborns are experiencing undetected sustained hypoglycemia? In the studies we performed in fetal sheep, thirty minutes of cerebral ischemia caused widespread neuronal cell death. An autism research group at Princeton University headed my Dr. Sam Wang has found in preterm babies that ischemic cerebellar brain injury confers an autism risk of 36 times the baseline risk. I believe this injury is happening in the first days of life due to insufficient breastfeeding and sustained hypoglycemia. I do not believe the current recommendations to exclusively breastfeeding moms respect the physiologic requirements of a newborn baby. Mothers are sitting in hospitals and are being sent home to breastfeed their child and are inadvertently starving their children. Their intake is unmonitored and so is their glucose. Thousands of years of evolution have wired mothers to respond to the need of their child and we are potentially 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. Before the 1984 data and the subsequent recommendations for exclusive breastfeeding from birth after that time, we as a species have never exclusively breastfed before lactogenesis. If you observe non-Western traditional cultures all around the world, mothers know that they may not produce enough milk in the first days after birth and routinely give "pre-lacteal feeds,” often scoffed in the breastfeeding literature as something that requires education and intervention. I believe that it is possible that the Western world may be wrong in its perception of feeding in the first days of life.
I am aware that too liberal use of formula can compromise breastfeeding success. But there are ways to promote breastfeeding while providing for a newborn's physiologic needs. The main factors that promote milk production are time at the breast and milk removal. Whether or not a child receives formula has no direct connection to whether milk comes in. If a mother puts her child to the breast for 20 minutes every 2-3 hours regardless of whether the child is hungry, pumps to make sure she is fully empty then feeds her child the well-deserved supplemental milk, she will stimulate her breast enough to produce milk. In summary, I hope you would consider publishing strong recommendations to pediatricians and to the medical community as a whole to perform the following patient safety interventions:
1) Daily pre- and post-breastfeeding weights for exclusively breastfeeding mothers.
2) Thorough counseling on the possibility of underfeeding and jaundice and giving mothers permission to supplement if it appears that their child is hungry and not doing well with next-day follow-up with a pediatrician if such event arises. Such mothers can be advised to pump if necessary.
3) Uniform daily bilirubin checks for exclusively breastfed infants before lactogenesis, regardless of physical exam findings.
4) Detailed instructions on the above-described protocol of breastfeeding before bottles until a mother's milk comes in.
The time for magical thinking has ended. Parents are looking for miracles in dietary supplements, no-MSG diets, and vaccination refusal to prevent autism. Most breastfeeding books suggest that “there is always enough colostrum to meet your baby’s need.” In the days following my son’s admission, I pumped every 2-3 hours for 20-30 minutes and produced 0.5 to 1 cc of colostrum per session. No matter what any textbook says, this amount of nutrition is not compatible with life, even for a one-day old newborn. We are spending extraordinary resources on finding new and mysterious causes of autism while ignoring the causes that are known, sitting idly for the experts to tell us what to do instead of doing everything we can to prevent those known causes.
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 only person that can know what a mother produces is that mother by pumping and weighing. 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. Daily weighing is insufficient when brain injury occurs within minutes of sustained hypoglycemia. Each meal for each child must be measured before breastfeeding has been established. Lastly, newborn weight loss in exclusively breastfed vs. supplemented babies must be investigated to see if there is a link to autism, speech delay and other developmental delays. 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.
Respectfully, Christie del Castillo-Hegyi, MD
cdelcastillohegyi@gmail.com
