Letter to Doctors and Parents About the Dangers of Insufficient Exclusive Breastfeeding and the Baby-Friendly Hospital Initiative

(En español)

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 6-year-old child who is neurologically disabled. I am writing you because my child fell victim to newborn jaundice, hypoglycemia and severe dehydration due to insufficient milk intake from exclusive breastfeeding 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, dehydration, hypoglycemia 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. Continue reading

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I Had All of The Support In The World And Breastfeeding Still Didn’t Work.

They tell you that if you prepare enough, it will work. They tell you that all you need is support, belief that you will be successful, and commitment. If only it were that simple.

I knew I might have issues. I had breast reduction surgery back in 2001, but had been told that using the right technique would preserve my ability to breastfeed. Nonetheless, I set out preparing to ensure I would be successful. Besides doing yoga, pilates, weight training, and exercise, I got into the midwife program and prepped diligently. I did prenatal workshops and tracked down a book on how to successfully be a breast feeding after reduction mom. I hired a private lactation consultant for a session ahead of time. We talked about teas and tinctures, techniques and diet to help my supply be optimal. We talked about how I could use a supplemental nursing system if necessary. I read extensively and was convinced breastfeeding was the only way to feed my son to ensure his well being and I would have no problem breastfeeding because I had SUPPORT.  

After lengthy pre-labour, labour finally started but my son was posterior and we stalled at 5cm dilated for over 10 hours. Finally, 33 hours after labour started, I delivered our son vaginally. I was exhausted after being awake for 3 days straight but determined to breastfeed. We seemed to struggle with latching and when he finally did, the pain took my breath away. I had already gone through 25 hours of labour before finally getting an epidural, but the pain during each feed was excruciating and only ended when he stopped feeding. Within a few hours I was concerned by the pain, and by my misshapen nipples that were already severely cracked and bleeding. I asked each nurse that I saw. All told me the latch was good and waved off my concerns about pain. My reading had told me to keep going but also mentioned it shouldn’t hurt this way. Worse yet, I often worried about how rarely he seemed satisfied with eating or would suckle to sleep. Yet we were released from hospital with instructions to be patient and told that breastfeeding would work out.

When I pressed about the bleeding, one nurse snapped at me: “What did you expect?”

My son barely urinated in the first few days, and by day 4 seemed more and more unsettled, finally crying 5 hours straight in the middle of the night. I was trying to let him feed as much as possible, but the pain persisted. The nipple shields a nurse gave me in the hospital helped my son to latch but the pain persisted with every feed, during the whole feed. My son still seemed always hungry and would stay latched on for over an hour if I left him. I’d try to persist feeding him, exhausted in bed, weeping at the pain and frustration.

CarlyCrying

After crying for 5 hours straight he fell asleep from exhaustion.

Our midwife team came for home visits every day. I dutifully showed our tracking charts of how long/often at each breast, his output and they would weigh him.He was quickly dropping weight so we tried to come up with a strategy. I kept up eating my oatmeal and good food like quinoa, as well as drinking lots of water. We bought a lactating tincture which I took religiously and by day 4 we both went for chiropractic and osteopathic care in case that would help. I got acupuncture. During this time, my wife contacted public health to have another lactation consultant come. I was doing all the right things, but my son was barely urinating and kept dropping weight. The lactation consultant ‘diagnosed’ a posterior tongue tie and lip tie which she believed was the cause of my pain and the state of my still bleeding nipples that would often be blanched white and misshapen after a feed. She thought temporary supplementation would be needed but was insistent no artificial nipples, so we had to tube feed him with SNS or by finger. I was told not to use a soother so he often fussed unless I let him latch onto the shield on my breast. I pleaded to get my son into specialist quickly and the frenectomy was performed at 7 days. Sadly, it did not help my pain. The Dr. who did procedure would tell me after procedure that she didn’t think tie was serious enough to warrant the frenectomy and that the real issue was an anatomically small jaw that would simply have to grow. 

By this point, my midwives were seriously concerned. My son had dropped over 11% of his body weight and still struggled to urinate. The minimal supplementation at breast was not adequate. Based on the recommendation of the LC, I pleaded for domperidone. Surely I had to get to exclusive breastfeeding. Formula was not the answer. My midwife explained I would need an EKG since it puts you at risk for heart arrhythmia. I have a family history of heart disease but I was still interested. (*Please note domperidone is banned in the US.)

At that point, my wife put her foot down. “We both need you alive. He needs you more than your breast milk.”

CarlyBSTS

Enjoying skin-to-skin time desperate to increase my milk supply.

From that point on, we stopped feeding with a tube and went to supplementation with a bottle. Our lactation consultant had cut off contact from me right after the frenectomy. Based on her comments, I was devastated to realize that she didn’t want to work with someone who used a bottle or a soother (something else the midwives insisted upon to give my poor nipples a chance to heal – my son wanted to be latched 24/7). 

All of this took place in the first 10 days of my son’s life. I persisted in trying to combo feed for 19 weeks. Any breastfeeding session still resulted in horrible pain with my nipples blanched white and misshapen. Worse was he hated latching without a shield and as he grew my supply never increased even with continued oatmeal, tincture, water, etc. I was really struggling to bond with him all those weeks later.

Even if I was the proverbial Queen of Sheba with an army of attendants and best medical care we would have still had all the problems. I still had low supply that was compounded by the chronic pain.  I look back and realize that I put us through a lot of heartache for no real benefit.

I finally weaned. My depression and anxiety lifted almost immediately and I bonded with the baby I had worked so hard to give the best start of life. I only wished I had listened to my midwife and not my lactation consultant, when she pleaded with me to understand that my son would thrive on formula. That I had done so much to make it work and it was ok. Sadly, I will never get back the time lost doing all of the unproven suggestions from my lactation consultant. Today, he thrives in daycare and I truly can’t tell which of his friends were breastfed, combo fed or formula fed. He is well adjusted, thriving and bonded to both of us. That is what really matters.

CarlyThriving

My precious son thriving on formula and love. 

HOW YOU CAN SUPPORT FED IS BEST ? JOIN US!

FIBparentingSupportGroup2

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.
  9. Shop and Fed is Best Foundation will earn cash back! We hope to develop our online safe infant feeding classes with these funds.
  10. If you need support, we have a private support group – Join

We believe all babies deserve to be protected from hunger and thirst every single day of their life and we believe that education on Safe Infant Feeding should be free. If you would like to make a donation to support the Fed is Best Foundation’s mission to teach every parent Safe Infant Feeding, please consider making a one-time or recurring donation to our organization.

Donate to Fed is Best

Thank you so much from the Founders of the Fed is Best Foundation!

CoFoundersPic

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Breast Is Best Failed Me And It Failed My Starving Son

My son was born at 8:33 am on a Saturday, delivered vaginally at 36 weeks and 3 days gestation. He weighed 6 pounds 3 ounces, and was in the 51st percentile for his gestational age. He latched onto my breast within the first 15 minutes. It was painful for me, but my nurse said his latch was great and that he was eating well. I continued to put him to breast every 3 hours as I had been instructed. We were told that we could see a lactation consultant, but one never came to our room. I was not concerned, since we were told he had a great latch and was feeding well.

On Sunday morning, we found out that he had lost weight and that he was suffering from jaundice and would need phototherapy. The medical staff told us that weight loss was normal and that his bilirubin levels were “borderline,” so the photo-therapy was just a preventative measure. Throughout the day he alternated between lethargy and crying. He only voided a few times, and his urine was very dark. His latch was still very painful, but I kept bringing him to breast to nurse every 3 hours. He never seemed to calm down after nursing.

HUNGRY1111

When he became inconsolable on Sunday night, known as the ‘Second-Night-Syndrome’ a nurse instructed us to continue trying to give him a pacifier and that he would settle eventually. He began screaming at my breast and refused to latch. There were no lactation consultants available at the hospital on Sundays. Another nurse brought in a Lansinoh latch assist, although my nipples were not flat or inverted. She instructed me to use the latch assist to draw out drops of colostrum, which I then swept out of the bulb with my finger and fed to my son. I did this for several hours. There were blood blisters on both of my nipples and I had not slept since the Thursday night before. My son eventually fell asleep in the early hours of the morning.

When he was weighed around 8 am on Monday, he was 5lb 4oz. He had lost 15% of his body weight in 48 hoursNewborn weight loss calculator 

Continue reading

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The ‘Second Night Syndrome’ is Abnormal and This is Why

Written by Jody Segrave-Daly, RN, MS, IBCLC

As a NICU/nursery nurse and IBCLC who has worked with newborn babies her entire nursing career, I was mystified when I first heard the phrase “second night syndrome.” When I began to research where the phrase came from, it became clear that this phrase is not based on any scientific research, but rather based on a theory that describes behavior of exclusively breastfed newborns on their second day of life. I think it is a frightening phrase for new parents to hear, as the word “syndrome” is defined as a group of signs and symptoms that occur together and characterize a particular abnormality or condition. 

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The truth is, the “second night syndrome” is a theory that describes abnormal newborn behavior.

Babies can go into a very deep, recovery sleep period after the first 2 hours from birth. This period can range from 8-12 hours after birth and is often a time that babies may not wake up on their own to feed every 2-3 hours. Babies often need gentle encouragement from their parents to wake them up for feeding sessions. Some babies will nurse for 5 minutes or suckle on a bottle for 5 minutes or less and fall back asleep. It’s well known that babies are fasting during this time and if they have enough caloric reserves, they may tolerate this fasting period without complications. Nursery nurses are quite skilled with performing clinical assessments of babies to ensure they are stable. They are looking for signs of hypoglycemia or low blood sugar levels, jaundice and other abnormal clinical markers.  Ten percent of healthy, full-term exclusively breastfed newborns develop hypoglycemia in the first days of life and may require specialized care until they are stable.  All babies are transitioning from intrauterine to extra-uterine life and need skilled observation from the nurse while they are bonding with their parents in their room.

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Risk factors for delayed onset of full breast milk production

After babies begin to ‘wake-up’ from their deep recovery sleep period on their second day of life, they will begin to exhibit stronger hunger cues to nurse or bottle feed, every 2-3 hours and they become much more alert. This is a new opportunity for parents to bond because their babies become alert again, opening their eyes while gazing at their parent’s adoring faces. Some babies are a bit demanding during this time because they are very hungry. Newborn babies are very easy to console after their feeding by being held and snuggled. Every nursery nurse will tell you if a baby is not content after feeding, something is wrong. I suspect this is where the word “syndrome” came from, which describes abnormal infant behavior. Continue reading

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Dr. del Castillo-Hegyi Raises Awareness at the U.S. Task Force for Research Specific to Pregnant and Lactating Women at the NIH

Bethesda, MD—On February 26, 2018, Dr. Christie del Castillo-Hegyi, Co-Founder of the Fed is Best Foundation traveled to the NIH to raise awareness on the gaps in breastfeeding protocols, research and education that is leading to common and serious complications in exclusively breastfed newborns.

Continue reading

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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 longI 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.

HUNGRY3

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.

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#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.

AnnaHbottle

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.

#3 Making Sure Your Newborn is Fed.pptx (14)

#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? 

 

Supplement1

 

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.

#3 Making Sure Your Newborn fed DiaperCounts.png

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).

Continue reading

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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?

MandyBrock

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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