By Her View From Home 
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.)
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.
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.
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.
This way you know your baby has eaten enough. If only I could go back in time.
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.
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.
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/.
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