Ornaments, Candles, Tees and More! Order Soon for Christmas Delivery!🎄 ➔

Written By: Jillian Johnson with commentary by Dr. Christie Del Castillo-Hegyi

Article originally published on fedisbest.org

Landon would be five today if he were still alive. It’s a very hard birthday–five. It’s a milestone birthday. Most kiddos would be starting kindergarten at this age. But not my little guy. I wanted to share for a long time about what happened to Landon, but I always feared what others would say and how I’d be judged. But I want people to know how much deeper the pain gets.

I share his story in hopes that no other family ever experiences the loss that we have.

Jarrod and I wanted what was best for Landon as every parent does for their child. We took all of the classes. Bought and read all of the books. We were ready! Or so we thought. Every class and book was geared toward breastfeeding and how it’s so important if you want a healthy child. Landon was born in a “Baby-Friendly” hospital. (What this means is everything is geared toward breastfeeding. Unless you’d had a breast augmentation or cancer or some serious medical reason as to why you couldn’t breastfeed, your baby would not be given formula unless a prescription was written by the pediatrician.)

If I Had Given Him Just One Bottle, He Would Still Be Alive   www.herviewfromhome.com

Landon was born full-term weighing 3360 g or 7 lbs. 7 oz, born by emergency cesarean due to fetal intolerance to labor. Apgars were 8 and 9 and he was stabilized. He was transferred 2.5 hours later to the Mother-Baby Unit and returned to his mother. He exclusively breastfed with excellent latch for 15 – 40 minutes every 1-2 hours.

If I Had Given Him Just One Bottle, He Would Still Be Alive   www.herviewfromhome.com

Landon, 12 Hours Old

Landon was on my breast – ALL OF THE TIME. The lactation consultants would come in and see that “he had a great latch and was doing fine” but there was one who mentioned I may have a problem producing milk. The reason she gave was because I was diagnosed with PCOS (polycystic ovarian syndrome) and it was just harder for women with hormone imbalances to produce milk. She recommended some herbs for me to take when I got out of the hospital.

While in the hospital, his mother’s risk factors for failed and delayed lactogenesis II (copious milk production) were identified by the IBCLC-lactation consultant. They were borderline diabetes, PCOS, issues with infertility, small, widely spaced nipples with minimal growth during pregnancy, being a first-time mom and emergency c-section. Despite that, she was encouraged to exclusively breastfeed. She was closely monitored with nurse, lactation consultant and physician support. Her baby’s latch was rated as excellent.

If I Had Given Him Just One Bottle, He Would Still Be Alive   www.herviewfromhome.com

On second day of life, we was crying and nursing all the time. Here he is frantically trying to suckle.

By the first 24 hours, he had nursed a total of 9.3 hours, had zero wet diapers and four dirty diapers. By 27 hours, he had lost 4.76%. His nursing sessions became longer and longer until he was on the breast continuously by the second day of life. On the second day, he produced 3 wet diapers and 6 dirty diapers and nursed for almost 14 hours total. By 53 hours of life, he had lost 9.72%.

At this time, the scientific literature on wet and dirty diaper production has shown that the number of diapers produced have no correlation with adequacy of milk intake in the first 4 days of life. The only study on diaper counts has shown that even newborns who lose excessive weight can produce up to 6 wet and dirty diapers a day. In addition, at this time, the Baby-Friendly Hospital Initiative has produced no data on the safety of newborn fasting and weight loss caused by exclusive colostrum feeding and what degree of weight loss protects a child from brain-threatening complications like hyperbilirubinemia, hypernatremic dehydration and hypoglycemia. So far, the scientific literature shows that babies who lose greater than 7% of their birth weight are at highest risk of developing excessive jaundice and hypernatremia to levels that can cause long-term developmental disability. It has also been found that 10% of healthy, term, exclusively breastfed babies undergoing the Baby-Friendly protocol experience hypoglycemia to levels that are associated with 50% declines in the ability to pass the literacy and math proficiency test at 10 years of age, even if aggressively corrected.

Constant, unsatisfied nursing and inconsolable crying are two of the signs of newborn starvation that lead to brain-threatening complications. If a child is receiving a fraction of their caloric requirement through early exclusive breastfeeding, they can experience severe hunger and thirst, which is why they will cry inconsolably and breastfeed continuously when it is the only source of calories and fluid they are offered. If a mother’s colostrum does not meet the child’s caloric requirement, they will breastfeed for hours a day in an attempt to relieve their hunger. A child who is “cluster-feeding” may actually burn more calories breastfeeding than they receive in return, which can result in fasting conditions and accelerated weight loss. The constant nursing and crying often found in newborns by the second day of life has been called “The Second Night Syndrome” in the breastfeeding industry. This is also when mothers receive the most pressure to avoid supplementation in order to increase rates of exclusive breastfeeding at discharge. Babies who reach critically low levels of reserve fuel and fluids before their mother’s milk comes in can be found lethargic with compromised vital signs after hours of constant nursing and fussing, at which time they are often diagnosed with hypoglycemia, excessive weight loss and/or hyperbilirubinemia, all markers of starvation.

Did you know newborns aren’t supposed to cry all the time? They’re supposed to eat and sleep and dirty their diapers. I had no idea that he was inconsolable because he was starving – literally. And when a baby is only on the breast, how do we gauge how much they’re actually getting out? Sure, there should be wet and soiled diapers, and weight checks, right? And where is the limit as to weight loss and a minimum for the diapers changed?
 
If I Had Given Him Just One Bottle, He Would Still Be Alive   www.herviewfromhome.com
 Being discharged with visible weight loss.
 
Landon was discharged at 64 hours (2.5 days) of life having lost 9.7% of his birth weight continuously and exclusively breastfeeding with a mother whose milk had not come in. These are routine and unremarkable findings in newborn babies discharged home to exclusively breastfeed. At this time, there are no studies using standardized developmental testing or serum markers of starvation that show that allowing babies to lose up to 10% of their birth weight protects them from brain- and life-threatening complications, despite wide-spread perception that it is normal for exclusively breastfed babies to lose. Therefore, Landon’s mother was given no instruction to supplement. He was discharged with next-day follow-up.

So we took him home – not knowing that after less than 12 hours home with us, he  would have gone into cardiac arrest caused by dehydration. And the best advice I was given by one of his NICU doctors while he was on life support is sure breast is best, but follow with the bottle.

This way you know your baby has eaten enough. If only I could go back in time.


Landon continued to continuously breastfeed at home and was found unresponsive, pulseless and blue after eventually falling asleep from cluster-feeding. His parents called 911. Per EMS, he was asystolic (no heart rate) and he received CPR en route to the local ER. By the time they arrived to the ER, he was found to have pulseless electrical activity (heart rate with no blood pressure). There, he was intubated and received several rounds of epinephrine. He was hypothermic with a temperature of 93.1 F. After 30 minutes of CPR, no cardiac activity was found on ultrasound. With parental consent, CPR was stopped and he was left on the ventilator while continuing to receive IV saline. 20 minutes later, with IV fluids, he regained his pulse. He was transferred to a level II NICU to get the head cooling protocol for babies that experience brain injury. He was diagnosed with hypernatremic dehydration and cardiac arrest from hypovolemic shock.
If I Had Given Him Just One Bottle, He Would Still Be Alive   www.herviewfromhome.com
Landon in the NICU on full life support.

I still have many, many days of guilt and questions – what if I would’ve just given him a bottle? And anger because how would I have known. I remember when Stella was born, and she was always quiet. I kept asking the nurses what was wrong with her. They said nothing. She’s doing what she’s supposed to. Sleeping. Eating. And it was then that I realized that it wasn’t normal for a newborn to cry as much as Landon did. He was just crying out from his hunger. But I didn’t know. I should’ve known. I still struggle daily feeling as though I failed him.

Landon received a brain MRI in the hospital which confirmed brain injury consistent with hypoxic-ischemic encephalopathy or brain injury from oxygen deprivation due to low blood pressure from dehydration and cardiac arrest. He was diagnosed with diffuse seizure activity on EEG, the consequence of severe, wide-spread brain injury. Given his poor prognosis, he was taken off life support 15 days later. The autopsy report deemed the causes of death were hypernatremic dehydration followed by cardiac arrest causing hypoxic-ischemic encephalopathy (diffuse brain injury).

If I Had Given Him Just One Bottle, He Would Still Be Alive   www.herviewfromhome.com

Jill holding Landon as he took his last breaths.

That little boy gave me ten of the most incredibly life changing months. I’ve been humbled. Challenged. My relationships have fallen apart. Some have come back together. I’ve learned forgiveness. And the true meaning of “life is short.” I love hard – to a fault. But I couldn’t live with myself knowing his death was in vain. I’ve learned so many lessons. I’ve learned the true meaning of compassion and unconditional love. Thank you for taking the time to read this. And now I invite you to watch 200 beautiful moments in our ten months with Landon.

Happy 5th Birthday my sweet boy. I love you to the moon and back.

— Jillian Johnson

The Fed is Best Foundation is dedicated to the prevention of newborn and infant starvation from insufficient exclusive breastfeeding. We do so by studying breastfeeding stories sent by mothers and the scientific literature on breastfeeding complications that lead to infant brain injury and death. Since the beginning of our campaign almost two years ago, we have received tens of thousands of newborn and infant starvation stories leading to the complications of hyperbilirubinemia, dehydration, hypernatremia,  hypoglycemia and failure to thrive. These complications occur because the current breastfeeding guidelines have not been studied for safety, operates with little awareness of the caloric and fluid requirements of newborns nor the amount transferred to babies until complications have already occurred. “Just one bottle” can save a child from these tragedies as it is often a mother’s first clue that a child is in fact starving from exclusive breastfeeding.

If your baby is experiencing distress and signs and symptoms of starvation, we encourage you to advocate for your child. We encourage mothers to notify hospital administrators if you are being pressured to avoid supplementation to alleviate your child’s hunger. You have the right to feed your child and your child has the right to be fed. No one but your baby knows how close they are to empty. The only way they can communicate distress is by crying. Listen to your baby and listen to your instincts.

Our message is simple. Feed your baby. Feed them as much as they need to stay safe and satisfied. Only they know what they need.

#FedisBest

For more information on how to protect your baby from feeding complications due to early exclusive breastfeeding, please read and download the Fed is Best Feeding Plan, a way to communicate your feeding choices to your health care providers.

In addition, please read and download the Fed is Best Weighing Protocol to prevent newborn dehydration and failure to thrive.

Lastly, for more detailed information, please watch our educational videos on Preventing Feeding Complications.

Our full list of parent resources can be found on our Resource Page.

If you wish to help parents learn how to protect their newborns from accidental starvation, please share this story and sign our petition to demand that the CDC, the AAP, the U.S. Surgeon General and the WHO/UNICEF Baby-Friendly Hospital Initiative warn parents about the dangers of newborn and infant starvation from insufficient exclusive breastfeeding. Go to https://fedisbest.org/sign-our-petition/.

 

If you liked this, you'll love our new book, SO GOD MADE A MOTHER available for pre-order now!

Pre-Order Now

Her View From Home

Millions of mothers connected by love, friendship, family and faith. Join our growing community. 1,000+ writers strong. We pay too!   Find more information on how you can become a writer on Her View From Home at https://herviewfromhome.com/contact-us/write-for-her//

My Baby Was Stillborn, But Still Born

In: Child Loss, Grief
My Baby Was Stillborn, But Still Born www.herviewfromhome.com

My baby was stillborn, but still born. In a cool white hospital room where so many had been born before. My body trembled and shook as his body worked its way out of my womb and into the hands of a doctor. He was void of breath, of sound, of movement, but he was still born. My baby was stillborn, but still lived. In the darkness of my womb. The outline of his body was visible against the darkness of the screen, his presence undeniable. The sound of his heartbeat drowned out the sound of mine as I watched his...

Keep Reading

I Am Not My Child’s Death

In: Cancer, Child Loss, Faith, Grief
I Am Not My Child's Death www.herviewfromhome.com

We are NOT what has happened to us or what this world says we are. That is not what defines us. While we are grieving parents, that is not what our whole story has to be about. Although, at times, we feel that our story is over. We ask, how do we go on and live full lives without our sweet Sophie with us? I’m still not 100 percent sure I know the answer to that. BUT the Lord says I am beloved. I am redeemed and accepted. I am holy and chosen. I am righteous and complete. I am...

Keep Reading

The Hardest Moments After Losing a Child

In: Child Loss, Grief, Motherhood
The Hardest Moments After Losing a Child www.herviewfromhome.com

Within the first three months following the death of my newborn daughter, I participated in one baby shower, attended two first birthday parties, had multiple infants in and around my home, and watched not one, not two, but five of my closest friends take happy, healthy babies home from the hospital. And in the midst of my own life-altering experience, I purchased, wrapped, and mailed a gift to every one of those new babies, because they deserved one. In the days and months after my daughter died, I didn’t run away or hide from babies at all. And this seemed...

Keep Reading

6 Commitments I Made to Myself After Child Loss

In: Child Loss, Grief, Kids, Motherhood
6 Commitments I Made to Myself After Child Loss www.herviewfromhome.com

Following the death of our infant daughter, I found myself facing an opportunity to activate the immense power of personal choice. Time and time again. Hour after hour, day after day. It felt as if every moment that passed provided me with a choice: to let the grief consume me, or not. In the midst of the most emotionally complex experience of my life, my ability to survive felt as simple as that. Will grief consume me, or not? Once I began believing that Olivia had lived out her life’s plan completely—that she had come, she had loved, she had...

Keep Reading

To the Moms and Dads Who Suffer Loss: You Are Not Alone

In: Child Loss, Grief, Infertility, Motherhood
To the Moms and Dads Who Suffer Loss: You Are Not Alone www.herviewfromhome.com

You are walking the hardest path anyone will ever walk—living this life without your children. Your losses have come in many shapes and sizes. You’ve lost tiny heartbeats early in the womb. You’ve screamed and sobbed through labor to deliver a silent but perfect little bundle. You’ve held a fragile infant for hours, days, weeks, or months, only to give him back to Heaven. You’ve watched your little one grow into a curious toddler and then held her a final time as disease or an accident took her away. You’ve lived a full childhood with your baby and even watched...

Keep Reading

A Letter to My Mama, From Your Baby in Heaven

In: Child Loss, Faith, Grief, Miscarriage
A Letter to My Mama, From Your Baby in Heaven www.herviewfromhome.com

Dear Mama, I know you miss me and wish you could watch me grow up. But instead, you sit in that rocking chair, tears streaming down your face, arms wrapped around the blanket that was supposed to be mine. I see you crying, Mama, wishing you could hold me. Wishing you could look into my eyes. Wishing you could hear me cry or call you “Mama”. I want you to know Jesus rocks me to sleep every night and while He does it, He tells me all about you. I know tulips are your favorite flower and that every spring...

Keep Reading

God Actually Does Give Us More Than We Can Handle

In: Child Loss, Faith, Grief
God Actually Does Give Us More Than We Can Handle www.herviewfromhome.com

I used to be someone who said, “God doesn’t give you more than you can handle.” That was before I had faced any hardships in my life. I didn’t know who God truly is. When people are going through something hard and decide to share it, it makes people uncomfortable. It’s hard to watch others who are hurting, and it’s hard not knowing how to help when it’s someone you love. “God doesn’t give us more than we can handle” is a very well-meaning encouragement that I know is meant in love. I’ve said it before! But it’s not really...

Keep Reading

Why I Got a Tattoo With My Teenage Daughters

In: Child Loss, Grown Children, Motherhood, Teen
Why I Got a Tattoo With My Teenage Daughters www.herviewfromhome.com

“We should get a tattoo, Mom.” I laughed. I knew it was just my younger daughter, Sarah’s way of getting herself a tattoo—to go along with her nose ring, and six ear piercings. She didn’t really want me to get one. Did she? “Truth!” My oldest, more conservative daughter, Elle, chimed in. “We should all go.” What? Home from college just five minutes, maybe she was bored. I heard tattoos really hurt and she hates pain, like I do. I glared at my two daughters, now 17 and 19. They can read my mind. I knew it! There was something...

Keep Reading

I’m Not Sure How Long I’ll Need an Antidepressant to Feel Normal…and That’s OK

In: Cancer, Child Loss, Grief, Mental Health
I'm Not Sure How Long I'll Need an Antidepressant to Feel Normal...and That's OK www.herviewfromhome.com

I tried to wean off of Zoloft and couldn’t. And that’s OK. I had never really been aware of the world of antidepressants. My life has been relatively uneventful—with the normal ups and downs that most of us go through. I knew people on medication for depression but never understood. How can you be THAT sad that you can’t just be positive and make the best of your circumstances? How can someone be THAT unhappy ALL the time to need medication? I didn’t get it. I felt bad for people going through it. Then my 2-year-old was diagnosed with Stage...

Keep Reading

To the Young Warriors Fighting Cancer, You Are Superheroes

In: Cancer, Child, Child Loss, Health
To the Young Warriors Fighting Cancer, You Are Superheroes www.herviewfromhome.com

Most people never get to meet their heroes. I have, in fact—I have met many heroes. These heroes didn’t set out for greatness; they fell victim to a terrible disease and faced it with courage, might and bravery like I have never seen before. And when we talk about this type of battle, there is no such thing as losing. whether the battle ended in death, life, or debility, each of these heroes defeated. My heroes are the innocent children who battle cancer. I high-fived, hugged, wept over, laughed and played with my heroes for 10 years as a nurse. And you better believe I...

Keep Reading