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.

It was then that I understood why Chaz had suffered. It was so he could help save other babies. And he did. I heard from those parents. I received letters and phone calls from people saying that thanks to that article in or on whatever magazine, newspaper, television show, or radio show, they got their child to the doctor in time. Not all stories had happy endings. But my son’s near-death experience was saving others.

He was now destined for a life of pain and obstacles. But some way, somehow, we would find a way to make it through. And make it through we have.

But as I scroll through the internet, I see that the problem is still there. The breastfeeding zealots are still winning. They are still bullying moms. They are not allowing moms to use breast and bottle feeding together in hospitals and newborn babies are suffering because of it.  They are suffering unnecessarily, and that bothers me. Actually, it pisses me off. I’m okay with you breastfeeding and with you recommending it. But I’m not okay with you jamming it down someone’s throat the way some people do religion.  Society has come to terms with the fact that not all women can get pregnant. So why is it so hard for society to understand that not all women can breastfeed? It’s really that simple. You have a woman, that has a baby. She tries to breastfeed. It doesn’t work. She gives a bottle. End of story. No one gets hurt in that story. But if we force this mom to keep putting her aggravated and very unhappy child to her empty breasts, then we are sending mom and baby down a road of no return.  You cannot reverse brain damage. And you cannot undo death. Breastfeeding is not worth the risk. It’s not. It’s just not.

So here we are twenty-five years later, why can’t the breast-feeders and the bottle feeders get along?  Why does it have to be one or the other? Can’t we coexist? For the sake of the hundreds of thousands that are affected by hypernatremic dehydration each year, can’t we just get along?  For the sake of the children at least.


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.

Donate to Fed is Best

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

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Jillian Johnson: My Message To Parents During World Breastfeeding Week-Just One Bottle

By Jillian Johnson

It took all of the courage I had to put aside the debilitating amount of guilt I carried for five long years to tell Landon’s story—his birth, the first days of his life and how he died. In fact, I still don’t know where I found that courage, but I am convinced Landon gave me the strength. I wasn’t prepared for the intense scrutiny my story received. I was utterly shocked because people came out of nowhere to discredit my story with a vengeance, but I quickly learned how to be gracious in such a vulnerable time.

After all, nothing anyone could say to me could hurt me more than the death of my newborn baby.

I can remember a very specific time, when I was sitting in the waiting room of the hospital and Landon was on life support. My dad was there with me and we were talking about Landon’s prognosis and I won’t ever forget him telling me what a special little boy he was and that he would do great things. I couldn’t quite wrap my head around what his words meant because Landon was most likely going to pass away, and my dad was talking about how he’s going to do great things. I never dreamed that his death would change the lives of so many people across the globe. Continue reading

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My Baby Starved at Kaiser Permanente – I Was Told Her Stomach Size Was Only 5 mL

My name is Cynthia G., a first time mom at the age of 39 with our miracle baby who we never expected since we were told we had “unexplained” infertility. Our daughter Amelia was born in 2016 at Kaiser Permanente in Irvine, California. I didn’t have a birth plan nor was I one of those moms-to-be that had it all planned out and knew every detail about having a child or going into labor. But what I did know was that I intended to breastfeed our daughter.

We were very happy with Kaiser’s baby-friendly approach and their pride of being one of the hospitals with a very high breastfeeding rate. We were told from the beginning that bottles and pacifiers were not allowed in the hospital so that the newborns and mothers had a chance to breastfeed. Of course, this information was never a red flag, but instead I found it to be another step towards encouraging breastfeeding. We even took the breastfeeding class they offered, but again we thought we were in good hands with great experts and completely trusted them. Continue reading

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Moms Thank The Fed Is Best Foundation For Safe Infant Feeding Support

Every day we hear stories from parents who were able to feed their babies safely and confidently with our help.  These stories are the fuel that fills our hearts and motivates our volunteers and advocates to continue our important work to teach parents and healthcare providers about safe infant feeding, and giving babies what they need to thrive and have the best possible start.

#fedisbest #safebreastfeeding #thrivingisbest  #fedismaximum

Read on for their words of thanks and encouragement:

Do you have a #fedisbest story? We’d love to hear from you. Send us your stories.

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
  2. Make a donation to the Fed is Best Foundation.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.

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Breastfeeding, Supplemental feeding, Formula-Feeding, Fed is Best

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 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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I Closed My Eyes As I Bit Down On My Gum And Waited For The Latch

My daughter, “little L,” was born a healthy 8.8 pounds, exactly on her due date in late September, several years ago. Like most new moms, I had spent all 9 months months studying up for my new job as a parent. And all the literature out there agreed that “Breast is Best!”.   I read and believed the unfounded claims that children who were exclusively BF had higher IQs, and were healthier than formula fed babies. I read that I should NEVER, under any circumstances, feed my child formula. I decided to leave work and stay home for a solid 6  months to exclusively breastfeed. After all, the books and doctors made it sound so magical, easy, and most of all, crucial. I had no idea what I was in for.

My problems were not related to supply. My milk came in roughly 8 hours after she was born, and by the time I left the hospital, I had enough milk to feed a village. (Her growth stayed in the 90th percentile for that entire year.) My problems were depression, loneliness, and sleepless nights,  all stemming from the unbearable pain I had with breastfeeding. 

When I left the hospital, I had several blood blisters already on both nipples, and at home, my nipples became black and  blue and cracked. They were open sores that bled constantly. I went without a shirt for a month, basically becoming a shut-in because wearing a shirt was excruciating. I couldn’t even shower because of the pain. 

EricaBlog3

Continue reading

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I Found Breastfeeding Success In The Fed Is Best Support Group

I have been praised in pro-breastfeeding groups for my tenacity.  For overcoming overwhelming odds.  For persisting when others would have “given up.” Along the way there were people who told me that I should just feed formula, that I should just stop breastfeeding because of the horrible experiences I was having, but I honestly thought those people were just misinformed.  I never thought that formula was bad, horrible, or poison, but I honestly thought that I should keep going.  It wasn’t until I broke down crying in front of my midwife with my second child, my second bout of severe PPD, and my second struggle to breastfeed (26 months into my parenting journey) that a medical professional or breastfeeding support person told me that my mental health was more important for my child than my milk. And I don’t think I will ever forget that moment.

My first pregnancy was textbook.  Very uneventful. I took the classes, read the books, had supplies, had supportive friends, ordered my pump.  I had heard it was very important that I not have any formula in the house because it might be “tempting” and that babies shouldn’t get bottles until 6 weeks, so I had no bottles and no formula.

My baby arrived at 36 weeks, 6 pounds 5 oz and quite healthy for a preemie. I was encouraged to supplement with formula from birth because we were afraid he wouldn’t be able to latch and suckle properly.  I used a nipple shield because of my flat nipples.  I wasn’t even 2 hours postpartum the first time I was hooked up to a pump to get a drop or two of colostrum which got smeared on baby’s lips.  We spent the first week in and out of the NICU and on and off phototherapy for jaundice.  By 3 weeks old, he was diagnosed with severe GERD, and we cut dairy and soy.

I triple fed for 3 months, every feed taking 1.5 hours if my husband could help, 2 hours if I was home alone.  I woke my baby to feed every 3 hours for the first 5 weeks.  I took all the galactogogues.  I took prescription drugs that I really shouldn’t have taken because I have a cardiac condition and aren’t even approved by the FDA. Continue reading

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The Benefits That Come From Breastfeeding Doesn’t Automatically Make It Best

My breastfeeding relationship seemed like it was going to be perfect from the start—I had no problem producing colostrum, my milk came in while in the hospital, my daughter latched on easily, and she had a very strong suck. The pediatrician even told me not to tell people how easy it was for us because “other moms would be jealous”. My daughter was back up to birth weight by the end of her first week.

Bethany5

My newborn daughter.

Although my daughter had wet diapers and was nursing well, she would spit up, quite often and something was stopping her from continuing to gain weight. When I took her to the pediatrician’s office multiple times, none of the doctors were concerned by the amount she spit up. They all said that I couldn’t know how much it truly was. Let me tell you something, though, watching my daughter choke and vomit all of her breast milk, I knew that she was spitting up too much. She was born above the 95th percentile but rapidly dropped her weight. Continue reading

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What Happens When Mothers Are Told Being Fed Is The Bare Minimum?

The Fed Is Best Foundation has a private Facebook support group for mothers who need a safe place to talk about their infant feeding challenges without judgement. Mothers told us how they felt when they fed their babies formula.

WIC

Bulletin Board At A WIC Office

Shannon: I was told my daughter needed formula when she was hospitalized for three days.  I cried for those three days because I felt so guilty. I kept telling her “I’m sorry. I’m sorry for doing this to you, baby girl. Mommy is so, so sorry.” The doctors had to bring me food because I refused to leave my daughter alone. Granted, she was only four months old, but at that time, I just couldn’t leave her. I felt like she had to know I was there for her, that I felt terrible for unknowingly starving her.  My husband at the time came to visit and he held me for hours as I cried saying “It’s my fault. It’s all my fault. I wasn’t enough. I’m not enough for her. They told me I would be enough and I’m not.”   To this day, when I have one of my bad days, it all repeats in my head– the psychological damage is still there.

Amanda: The first time I fed my son a bottle of formula, I felt like an absolute waste of space as a mother. I genuinely felt like the worst, piece-of-garbage, failure-of-a-parent there was. I felt like I had failed him in every single way. Not only had I starved him and been unaware of it—I felt like I should have just known—but I had to use formula from a can to nourish him because my body stubbornly refused to make enough milk. I felt like anybody could just pick up a bottle and completely replace me in his life. It was a terrible feeling.

Continue reading

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