My Baby Suffered And Almost Died–Why Are The Risks Of Exclusive Breastfeeding Not Taught To Mothers?

As a first-time mom I braced myself for the worst but when my water broke that morning, I was super calm.  At the hospital, I had some IV pain medications, but labor went really smoothly and quick. A little after my baby was born I decided to try and feed him, not really knowing what I was doing or supposed to do. The LC came and tried to help him to latch. He didn’t really want to latch, so she had me hand express some colostrum and spoon feed it to him. She warned me not to use a pump (Why I don’t know) and that the small drops I was expressing was enough for him. So, he had drops of colostrum all day.

The second night he was crying all night long. I kept telling the nurses that I didn’t think he was getting anything from me, because he wanted to nurse non-stop and would cry as soon as he was off my breast. But, I was told his crying was normal. Looking at my feeding log I got maybe 2 hours of sleep.  I was exhausted and very concerned.

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We were discharged after 48 hrs and they watched him latch and nurse before leaving.  We were told he needed to come back the next morning because he was jaundiced and needed blood work done. We went back and learned his jaundice level was high and he needed admitted for photo-therapy. His blood work also showed his blood sugar was dangerously low and his other blood work that was not normal too. He lost an entire pound because I was not making any colostrum and he was starving! They started an IV as fast as they could to stabilize him. He kept crying so a nurse helped me feed him formula using an SNS system so help soothe him.

He had to be life flighted to a bigger town, with a higher skilled NICU to take care of him because he was so sick. I was already a mess with everything going on, but having my baby fly to a better NICU was terrifying.

#3 Making Sure Your Newborn is Fed.pptx (6)

#3 Making Sure Your Newborn is Fed.pptx (8)

 

Once there, he had a feeding tube placed. His jaundice went away very quickly from the IV fluids and feedings. We tried breastfeeding a few times, but it just stressed me and him out too much. I pumped, but grew increasingly frustrated and sad as each time the amount I got grew less and less. My baby stayed  in the NICU for over a week and during that time we found out his newborn screening came back positive for  MCADD (MCAD), A metabolic disorder. With MCADD, my baby cannot go too long without food because once  he runs out of glucose, he can’t break down fats for energy. This can lead to death quite quickly. I am haunted by his cries now after birth, knowing he was telling me he was so hungry and needed food, despite the nurses, lactation consultants telling me his cries were normal. If we had waited a few more hours to get back to the hospital for his blood work, he probably not be here with us today.

 

About one in every 15,000 babies in the United States is born with MCADD. MCADD happens more often in white people from Northern Europe and the United States. About 1 in every 70 Caucasians is a carrier for MCADD. One baby in every 10,000 born in England is diagnosed with MCADD by newborn screening; around 60 babies each year.

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We were discharged and he required to be on a schedule of eating every 3-4 hrs. Once he was a year old, the longest time he can fast for is 12 hours, and that will continue for his whole life. If he’s sick, throwing up or not eating, he has to go to the ER to get an IV to keep his sugar levels stable. He is now 10 months and super smart and adorable and loves eating.  I am pregnant again with his brother (who has a 25% chance of having MCADD as well). It just makes me so scared to think about other babies that could have metabolic disorders who are born in BFHI hospitals.  It puts them at much higher risk if they don’t receive enough colostrum  during the early days of life, because of their restrictive no supplementing policy. After all, my baby screamed for days and I was told making drops of colostrum was ALL he needed.   Who would’ve thought my husband and I would be carriers of this rare disorder and that our child would have it.

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#3 Making Sure Your Newborn is Fed.pptx (15)

I do want to try breastfeeding again with his brother. Of course, I will be supplementing in the beginning and as needed. But I’ll ask many questions to help my journey when the due date gets closer. I’m looking forward to all the help and good educational information I’ll have this time from The Fed Is Best Foundation. The question I will always have is why are exclusive breastfeeding risks not taught to mothers? 

 

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Dear little man,

I am so sorry your first days were no fun. I wish I could think back on those days with fondness and happiness, and parts of it bring me those feelings, but I get sad and angry and feel incredibly guilty too. Now here we are on your first birthday and I know not one person could ever make me feel bad or wrong or less of a mother for giving you formula, because you have thrived and grown and it was the absolute best choice for us. Look at you now, my little man.  Love, Mommy~AnnaH55


HOW YOU CAN SUPPORT FED IS BEST

There are many ways you can support the mission of the Fed is Best Foundation. Please consider contributing in the following ways:

  1. Join the Fed is Best Volunteer group to help us reach Obstetric Health Providers to advocate for counseling of new mothers on the importance of safe infant feeding.
  2. Make a donation to the Fed is Best Foundation. We are using funds from donations to cover the cost of our website, our social media ads, our printing and mailing costs to reach health providers and hospitals. We do not accept donations from breast- or formula-feeding companies and 100% of your donations go toward these operational costs. All the work of the Foundation is achieved via the pro bono and volunteer work of its supporters.
  3. Share the stories and the message of the Fed is Best Foundation through word-of-mouth, by posting on your social media page and by sending our resources to expectant moms that you know. Share the Fed is Best campaign letter with everyone you know.
  4. Write a letter to your health providers and hospitals about the Fed is Best Foundation. Write them about feeding complications your child may have experienced.
  5. Print out our letter to obstetric providers and mail them to your local obstetricians, midwives, family practitioners who provide obstetric care and hospitals.
  6. Write your local elected officials about what is happening to newborn babies in hospitals and ask for legal protection of newborn babies from underfeeding and of mother’s rights to honest informed consent on the risks of insufficient feeding of breastfed babies.
  7. Send us your stories. Share with us your successes, your struggles and every thing in between. Every story saves another child from experiencing the same and teaches another mom how to safely feed her baby. Every voice contributes to change.
  8. Send us messages of support. We work every single day to make infant feeding safe and supportive of every mother and child.  Your messages of support keep us all going.  Thank you for your advocacy!
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My Three Day Old Baby Went Limp And Turned Blue; She Was Starving And I Almost Lost Her

First of all, I had always seen your Facebook page and thought to myself “this could never happen to me” or “I wouldn’t be that naive.” But now, can I share my story?

I was induced at 39 weeks due to preeclampsia. Since my cervix was stubborn, however, I ended up with a c-section. My baby was born 7 lbs 11 oz on January 10, 2018.

 I was hooked up to magnesium to help with my blood pressure and was bedridden for 24 hours after the c-section. My hospital was a BFHI-certified hospital, and they bragged about their excellent lactation consultants (IBCLCs). That made me happy because I had always dreamed of breastfeeding. I never imagined how hard it would be.

I was recovering from major surgery and felt weak, overwhelmed and quickly became frustrated trying to take care of my baby and breastfeed her. I cried multiple times during my short stay. Why was this so hard? I constantly had to ask for breastfeeding help from the nurses and lactation consultants. By the end of the second day, though, I was proud I got my baby to breastfeed without help. She was constantly feeding, every hour on the dot. No one was concerned about her excessive breastfeeding at all. The nurses seemed pleased with her diapers counts.

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We were discharged from the hospital not even 48 hours after my c-section. The first night with my baby was unbearably tough. If she wasn’t breastfeeding, she was crying. This was not fussing. She cried and screamed and the only way she stopped crying was if she was on my breast.  My mom stayed by my side most of the night trying to help soothe her, but my baby only wanted to be on my breast. Continue reading

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Starvation Jaundice and Bilirubin-Induced Brain Injury in Breastfed Newborns

Lecture Delivered by Dr. Lawrence Gartner, Chief Medical Director of Baby-Friendly USA

We have uncovered a lecture provided to lactation consultants at a prominent breastfeeding conference given by Baby-Friendly USA Chief Medical Consultant, Dr. Lawrence Gartner, who discussed the risk of brain injury from starvation-related jaundice, called kernicterus, 90% of which occurs to breastfed babies who lose excessive weight, according to his lecture. Yet despite this training, no information on the risk of preventable brain injury from starvation-related jaundice in breastfed newborns exists in patient-directed breastfeeding literature published by breastfeeding advocacy groups other than our own.

 

 

 

 

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Exclusively Breastfed Newborns Have Double the Risk of Being Rehospitalized

By Christie del Castillo-Hegyi, M.D.

This week, the journal Academic Pediatrics, published a study conducted by the Newborn Weight Loss research group led by Drs. Valerie Flaherman and Ian Paul, which consisted of 143,889 healthy, term and near-term newborns born at the Baby-Friendly Northern California Kaiser Permanente hospital system from 2009-2013.[1] They included newborns who were discharged from their birth hospitalization without requirement of intensive care, which includes newborns who developed jaundice before discharge. They looked at the effects of mode of feeding, namely exclusive breastfeeding and exclusive formula feeding during the birth hospitalization on the rates of rehospitalization and number of outpatient follow-up visits. In addition, they looked at the effects of percent weight loss on the same outcomes.

Overall, 6.2% (1 in 16) of the healthy term newborns studied were readmitted; 4% were vaginally delivered and 2.2% were Cesarean delivered. This represents 8921 newborns over the five year period, almost 5 babies per day. They showed that exclusively breastfed newborns had slightly more than double the risk of being rehospitalized, even when adjusted for gestational age, birth weight and maternal race/ethnicity. Exclusively breastfed newborns also had significantly more (32% more) outpatient visits in the first 30 days after birth compared to exclusively formula-fed newborns. The leading cause of readmission was for hyperbilirubinemia or jaundice and need for inpatient phototherapy. The purpose of phototherapy is to reduce blood bilirubin levels in order to prevent or limit brain injury, a complication of insufficient feeding and dehydration commonly found in exclusively breastfed newborns before the onset of copious milk production (lactogenesis II).

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I Shared My Story a Year Ago And I Was Told To Go Kill Myself – How I Am Healing

By Mandy Dukovan, MS, MFT, Marriage and Family Therapist, Fed is Best Foundation Senior Advisor

It’s incredibly hard to put into words all the things that The Fed Is Best Foundation has done for me the past year.  I happened to stumble upon the Foundation when I noticed a friend of mine “liked” one of their blog posts. I was a first-time mom who was struggling with many different feelings, and wasn’t sure who or where to turn to. My son was 2 months at the time, and was just beginning to thrive after I had begun to supplement him with formula. While I was so happy to see my baby finally gaining weight and thriving, I had haunting memories and raw emotions that I was struggling to sort out. I had immense guilt that I didn’t see the signs that my baby was hungry, which tortured me non-stop. I was embarrassed that I could look at his 1-month picture and now see that he was obviously malnourished, but how on earth did I miss this at the time?

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1 Month Old

I was angry that I didn’t follow my own instincts that something was wrong with him and was angry that I believed all the terrible things I was told from lactivists that would happen to him,  if I gave him a drop of formula. I worried that we would not have the kind of bond that babies who were exclusively breastfed (EBF) experienced with their mothers. I now know that our bond is so much stronger because we bottle-fed him and no longer experienced the immense stress that came each time I tried to breastfeed my baby. I got to a point where I dreaded even trying to breastfeed him, but I was told that was the best thing I could do for my baby, so I kept going, at the expense of my baby’s health and my well-being. I honestly believed I was the only mother who had experienced what we went through because I only heard the stories about how amazing and natural breastfeeding was and every mother could breastfeed if only she tried hard enough.

Since I am a therapist, I knew I needed to share my story. I found courage in my strong desire for other babies and mothers not to struggle. I also found courage in the fact that I needed a reason for all of the suffering—I needed to know that Brock’s struggle was not in vain. I kept telling myself, “If I reach even one mother and prevent even one baby from suffering like Brock, then I have to do this.”  

Then I shared my story… Continue reading

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The Shaming Began In My Hospital Breastfeeding Course And Never Stopped

The shaming began prior to delivery, at the hospital breastfeeding class.  A soon-to-be mom asked if she should keep some formula on-hand, just in case she was unable to breastfeed.  The lactation consultant (IBCLC) insisted she not keep any formula around because, as soon as you start feeding the baby formula, you will give up on breastfeeding and never forgive yourself! She also said it was rare for a mother to not be able to produce enough milk, which is not true.  I told her it was fine to get some formula, if for nothing than to relieve the intense pressure of exclusively breastfeeding that was being forced in our class.  The IBCLC also instructed us not to use our pump for at least twelve weeks, and even then, only if we were returning to work–because pumping would interfere our milk supply. I later learned this is also  not true.

I delivered my beautiful baby, but I could not get her to latch, no matter what I tried after delivery. The IBCLC  said that I had flat nipples and taught me a new feeding position to try, but had to rush away. I struggled to get my baby to latch the entire time in the hospital without any luck, but no one was concerned.  We left the hospital, and on day three, my milk came in with a vengeance.  My breasts were rock solid and felt on fire.  My daughter was screaming and hungry but still could not latch. It was 2am. I was crying and begging my husband to go to the store for some formula (I had not taken my own advice because I was confident I would be able to breastfeed.  The thought never occurred to me that there would be trouble).  Meanwhile, I was attempting to hand express into a spoon to feed to my daughter. When that didn’t work, I quickly learned how to use my new pump and was I able to pump 5oz! I fed her my expressed milk by bottle, because she still could not latch onto my flat nipples and extremely engorged breasts.  At her doctor appointment the following morning, she had lost 14% of her body weight, despite my feeding her with bottles all during the night. I continued to pump and bottle feed my starving baby as much milk as she wanted and she began to gain back her weight quickly.   I went to see the IBCLC several times for latching help, and even though I shared how happy I was to pump, she told me to continue putting her to the breast. But she simply could not latch and breastfeed! What was I suppose to do?

I became an exclusively-pumping mom.

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When A Mother Says She Isn’t Making Enough Colostrum, Believe Her The First Time

My son, Jackson, was born healthy and weighed 6lbs 15oz.  As a first-time-mom, I trusted my hospital would help me to exclusively breastfeed my baby.  The nurses and lactation consultants helped me with proper latch and positioning and told me he was doing great.  He wanted to nurse every hour, and I was exhausted. 

AmyPCS2 I began to think something was wrong because he cried and cried and continued to cry even after every breastfeeding session.  I kept asking the nurses if I was making enough colostrum and they said I was, but they never, ever checked to see if I was even producing colostrum.

I had brought my pump to the hospital so I could learn how to use it since I was going back to work. I asked if I could pump my breasts to check and they said no, that my baby would become nipple-confused. I then asked for formula because I just knew he was hungry. They very strongly discouraged me from using formula every time I asked. Continue reading

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The Fed is Best Foundation’s Top Priority is Saving Babies’ Lives

Christie del Castillo-Hegyi, M.D., Co-Founder of the Fed is Best Foundation

In response to a letter written by 1000 Days director, Lucy Martinez-Sullivan and follow-up editorial from Kimberly Seals Allers, we wanted to take an opportunity to set the record straight.The mission of the Fed is Best Foundation is to protect infants from complications and injuries resulting from accidental starvation under currently promoted breastfeeding policies. In order to protect infant safety and ensure the patient and human rights of mothers and babies, we have built a non-profit organization committed to: (1) the study of exclusive breastfeeding complications that can result in brain injury and, in the most severe instances, death; and (2) raising public awareness to signs of infant hunger and the consequences that can result based on peer-reviewed research.

As part of our public health awareness commitment, the Fed is Best Foundation has developed and compiled extensive resources for parents and health professionals to promote safe breastfeeding and safe infant feeding policies based on evidence, including, the science of infant feeding, the caloric and fluid requirements of newborns and the caloric yield of exclusive breastfeeding. These core matters of infant feeding are shockingly absent from current breastfeeding curricula and protocols. Our Foundation is not against breastfeeding; it is for safe breastfeeding and close monitoring to prevent complications and injuries to infants reported in the medical literature, the media and by the thousands of mothers who have sent us their stories, which we receive each and every day. Continue reading

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I Contacted Every Patient Safety Organization After My IBCLC Withheld Clinical Information From Me Causing My Newborn To Starve.

When I struggled to breastfeed my son, I believed I was failing, not just at breastfeeding, but at motherhood. What was supposed to be the “best” way to feed my new baby was painful, anxiety-inducing, and landed my son back in the hospital for dehydration, eleven percent weight loss, and inability to take a bottle.

My hospital’s solution included many appointments with their lactation consultants, fenugreek from their new mother boutique, and a nurse-bottle-pump (triple-feeding) routine that drove me to the brink of despair and did nothing to increase my milk supply.

At no point in my son’s first two months did any of the lactation consultants, nurses, doctors, or any other medical staff offer a concrete explanation for my low milk  supply or my son’s vice-clamp latch. Because no one seemed to know why we couldn’t get the hang of it, I felt I was not trying hard enough.

Sometime after my son’s first birthday (my original “breastfeeding goal”), I came across several online articles that explained insufficient glandular tissue, also called breast hypoplasia. I knew my breasts were an odd shape, but I was taught by the hospital lactation “experts” that breast shape and size didn’t determine breastfeeding ability. Looking at pictures of similar widely-spaced, tube-shaped breasts that produced little or no milk left me feeling a strange cocktail of emotions—validation, disbelief, anger.

I wondered why staff at my hospital, a long-time Baby Friendly Hospital Initiative (BFHI) accredited facility, hadn’t told me that I was at risk of insufficient milk production. 

Yellow with Grayscale Photos Photographer General Media Kit (20)

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Press Release: World Health Organization Revised Breastfeeding Guidelines Puts Babies at Risk Despite Pleas from Experts — Informing the Public “Not a Top Priority”

By the Senior Advisory Board of the Fed is Best Foundation

A key recommendation of the 1989 World Health Organization Ten Steps to Successful Breastfeeding which guides the Baby-Friendly Hospital Initiative (BFHI) is: “give infants no food or drink other than breast-milk, unless medically indicated.” This has led to serious complications from accidental starvation of babies, including dehydration, hyperbilirubinemia (jaundice) and hypoglycemia (low blood sugar) — known causes of infant brain injury and permanent disability. Last week, the WHO issued draft revised breastfeeding guidelines, failing to revise this recommendation. These guidelines define the standard of care for breastfeeding management in all healthcare facilities worldwide. Nearly 500 U.S. hospitals and birthing centers and thousands more worldwide that meet the criteria of the BFHI are certified as Baby-Friendly, adhering to the application of the WHO’s Ten Steps.

On Sept. 22, 2017, senior members of the Fed is Best Foundation, and guests including a neonatologist from a leading U.S. tertiary care hospital and a pediatric endocrinologist, Dr. Paul Thornton, M.D, from Cook Children’s Hospital Fort Worth, lead author of the Pediatric Endocrine Society’s newborn hypoglycemia guidelines, met via teleconference with top officials of the WHO Breastfeeding Program: Dr. Laurence Grummer-Strawn, Ph.D., Dr. Nigel Rollins, M.D. and Dr. Wilson Were, M.D. to express their concerns about the complications arising from the BFHI Ten Steps and to ask what, if any, monitoring, research, or public outreach the WHO has planned regarding the risks of accidental starvation of exclusively breastfed newborns. The Foundation members who attended were 1) Christie del Castillo-Hegyi, MD, Co-Founder, 2) Jody Segrave-Daly, RN, IBCLC, Co-Founder, 3) Julie Tibbets, JD, Partner at Alston & Bird, LLP, Pro-Bono Attorney for the Foundation, 4) Brian Symon, MD, Senior Advisor, and 5) Hillary Kuzdeba, MPH, former quality improvement program coordinator at a childrens hospital , managing infant feeding projects and Senior Advisor.

Emails confirming meeting between the WHO and the Fed is Best Foundation available here.

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