by Jillian Johnson with commentary from Dr. Christie del Castillo-Hegyi
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 the pediatrician wrote a prescription.)
Sleeping comfortably a few hours after birth
Landon was born full-term weighing 3360 g or 7 lbs. 7 oz, born by urgent cesarean due to fetal intolerance to labor after the water had broken. [Previous publication of this blog said he had an emergency c-section. He was delivered by low transverse incision over 12-14 minutes, which is considered an urgent, not a STAT section.] 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, is 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 that 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 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 breasts 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 by a nurse, lactation consultant, and physician support. Her baby’s latch was rated as excellent.
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 the 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 have been called“The Second Night Syndrome” in the breastfeeding industry. This is also whenmothers 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 that newborns aren’t supposed to cry all of the time? They’re supposed to eat and sleep and dirty their diapers. I had no idea he was inconsolable because he was literally starving. 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?
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 from unintended starvation because I was the mother who had no colostrum for my baby. The best advice I was given by one of his NICU doctors while he was on life support is that the breast is best, but follow with the bottle if they are still hungry.
This way you know your baby has eaten enough….if only I could go back in time.
Landon continued to breastfeed at home continuously 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 at 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. Twenty minutes later, with IV fluids, he regained his pulse. He was transferred to a Level III NICU to get the head cooling protocol for babies that experience a brain injury. He was diagnosed with hypernatremic dehydration and cardiac arrest from hypovolemic shock.
Landon is in the NICU on full life support.
I still have many, many days of guilt and questions – what if I had just given him a bottle? And anger because how would I have known? I trusted my healthcare professionals to protect my baby from harm. I remember when Stella, my daughter 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 and 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).
Jill held Landon as he took his last breaths.
That little boy gave me ten of the most incredible 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.
— Jillian Johnson
To Learn More About Ensuring SAfe and ADequate Feeding While Breastfeeding Your Newborn
Order the Fed Is Best book at all major retailers or by clicking on the button below. With it comes the Fed Is Best Book Resource Page, a free online guide to safe and adequate breastfeeding.
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 and operate 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 they are pressured to avoid supplementation to alleviate their 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.
How to supplement your baby until your milk comes in:
How To Prepare For Supplementing When Breastfeeding Your Baby In The Hospital
Jillian Johnson: My Message To Parents During World Breastfeeding Week-Just One Bottle
http://fedisbest.org/2022/01/nigerian-mother-speaks-out-about-her-babys-death-after-being-told-to-keep-exclusively-breastfeeding-what-she-wants-human-rights-organizations-to-know/
My Baby Suffered And Almost Died–Why Are The Risks Of Exclusive Breastfeeding Not Taught To Mothers?
Just One Bottle Would Have Prevented My Baby’s Permanent Brain Damage from Hypoglycemia
Feeding Your Baby—When Supplementing Saves Breastfeeding and Saves Lives
U.S. Study Shows Baby-Friendly Hospital Initiative Does Not Work
NICU Nurse Discloses Newborn Admission Rates From Breastfeeding Complications in BFHI Unit
Nurses Are Speaking Out About The Dangers Of The Baby-Friendly Health Initiative
http://fedisbest.org/2018/11/neonatal-nurse-practitioner-speaks-out-about-the-dangerous-and-deadly-practices-of-the-bfhi/
Hospital Drops Baby Friendly Program After Doctors Baby Was Harmed
Letter to Doctors and Parents About the Dangers of Insufficient Exclusive Breastfeeding
Two Physicians Describe How Their Baby-Friendly Hospital Put Their Newborn in Danger
Fed is Best Statement to the USDA Regarding the Harms of the Baby-Friendly Hospital Initiative
Nurses Quit Because Of Horrific Experiences Working In Baby-Friendly Hospitals
Nurses Are Speaking Out About The Dangers Of The Baby-Friendly Health Initiative
“Is Baby-Friendly Safe?”: BFHI Safety Issues Discussed at National Neonatology Conference
CONTACT US/VOLUNTEER
THANK YOU FOR YOUR INTEREST IN THE FED IS BEST FOUNDATION!
Our mission statement is:
The Fed Is Best Foundation works to identify critical gaps in the current breastfeeding protocols, guidelines, and education programs and provides families and health professionals with the most up-to-date scientific research, education, and resources to practice safe infant feeding, with breast milk, formula or a combination of both.
Above all, we strive to eliminate infant feeding shaming and eliminate preventable hospitalizations for insufficient feeding complications while prioritizing perinatal mental health.
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:
- Join us in any of the Fed is Best volunteer and advocacy, groups. Click here to join our health care professionals group. We have: FIBF Advocacy Group, Research Group, Volunteer Group, Editing Group, Social Media Group, Legal Group, Marketing Group, Perinatal Mental Health Advocacy Group, Private Infant Feeding Support Group, Global Advocacy Group, and Fundraising Group. Please send an email to Jody@fedisbest.org if you are interested in joining any of our volunteer groups.
- If you need infant feeding support, we have a private support group– Join us here.
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- 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.
- Sign our petition! Help us reach our policymakers, and drive change at a global level. Help us stand up for the lives of millions of infants who deserve a fighting chance. Sign the Fed is Best Petition at Change.org today, and share it with others.
- 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 FREE infant feeding educational resources to expectant moms that you know. Share the Fed is Best campaign letter with everyone you know.
- Write a letter to your health providers and hospitals about the Fed is Best Foundation. Write to them about feeding complications your child may have experienced.
- Print out our letter to obstetric providers and mail them to your local obstetricians, midwives, family practitioners who provide obstetric care and hospitals.
- Write your local elected officials about what is happening to newborn babies in hospitals and ask for the 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.
- Send us your stories. Share with us your successes, your struggles and everything 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.
- 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.
- Shop at Amazon Smile and Amazon donates to Fed Is Best Foundation.
Or simply send us a message to find out how you can help make a difference with new ideas!
For any urgent messages or questions about infant feeding, please do not leave a message on this page as it will not get to us immediately. Instead, please email christie@fedisbest.org.
Thank you and we look forward to hearing from you!
Parents tell us they were not taught how to supplement their babies safely, if necessary to prevent exclusive breastfeeding complications.
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 http://fedisbest.org/sign-our-petition/.
Please consider making a donation to the Fed is Best Foundation to support its mission of providing safe infant feeding education and support and raise awareness on the harms of insufficient infant feeding.
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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Happy Birthday sweet Baby Landon! My heart just broke for you and your family. I’m so sorry the medical community failed you. Your story also hit very close to home for me as well. Like you, my first born, about to turn 6, was born on a Thursday and solely breastfed in the hospital. He nursed a lot and started crying a lot the second day, but they sent us home on Saturday afternoon. The first night home from the hospital, it was around midnight and he wouldn’t stop nursing and was just screaming when he wasn’t nursing. My husband went to CVS and got formula. We had a huge fight when he got back with me saying he had to just be breastfed (like what they drill into a new mom’s head) and my husband saying he had to eat – he was hungry. I reluctantly caved and we gave him the bottle and he drank nearly the whole 2 or 3 ounces and then fell fast asleep. We continued to supplement the whole next day (Sunday). His follow-up appointment was on Monday where they put him on a weight watch because he lost 10% of his body weight. I can’t imagine if we never supplemented what would have happened. My milk didn’t come in till Monday night while I was pumping. At the end, the supplementation didn’t affect our nursing relationship. He nursed til 15 months old.
Thank you for being brave enough to share your story. I never knew that this happened to baby’s whose mom’s milk didn’t come in. Please find comfort that your loss was not in vane and please continue to courageously share your story and spread awareness. RIP Landon.
Im sorry for your loss, thank you for being brave enough to share with us. When I had Elias 6 months ago. I was told that it is normal for a baby to nurse 24 hours a day, they said it was cluster feeding. When I questioned the doctors and Lactation Consultants about why Elias never slept why he cried all the time and why he was nursing so much I was told that not all babies sleep and that he was cluster feeding and as long as he had enough diapers it was okay. I even told the lactation consultants and the pediatrician that his diapers were so dry that I had to smell them to smell the urine and I was told that it was okay as long as there was pee on them. Even though he continued to lose weight. I did everything that they suggested I drank a 100 ounces of water a day, Gatorade, steel oats, power pumping, lactation cookies, Reglan, fenugreek, skin to skin and nothing helped he continued to lose weight. Not until the lady at WIC got me a hospital-grade pump did I see any increase in my milk supply and this was when Elias was almost 2 months old, at that point I could get about 2 ounces out of 3 hours worth of pumping from both breasts. When he was 2 months old and not at his birth weight and he had only gained 4 ounces in that month the pediatrician told me that I could not wait any longer or else they were going to admit him to Children’s Hospital for failure to thrive. This scared the crap out of me so I immediately went to the store and bought formula and bottles. The first time I gave him a bottle I watched him and bawled my eyes out because I could tell that he was literally starving. I did everything that I was supposed to do I listened to their advice and this could have very easily been me except I live an hour away from the closest hospital which would have made my situation even more dangerous. I have encountered many breastfeeding mothers who feel pious and holier-than-thou because they can breastfeed. Breastfeeding does not make you a good mother nor does does it make you better than another mother who chooses to use formula you do not know that woman story. I absolutely detest the saying Breast is Best! This article is my example as to why. I have had many women in the best feeding groups on Facebook tell me that giving Elias formula is poisoning him and that I should never under any circumstances give him formula. Giving Elias formula did not poison him he is growing and thriving he is alert and active and he is an amazing baby. Chosing to hold out on formula could have taken his life. It scares me that this woman’s story almost mirrors my fight to breastfeed and I am thankful that we live in a day and age were formula exist. Not till later did I find out from my OB that my years of diabetes, PCOS and hormone therapy that I received for my endometrial cancer caused hormone imbalances which led to my inability to produce milk. Sure Breastfeeding is ideal, but FED IS BEST!!
Thank you for sharing, I can’t even imagine the pain that is to loose a child. I 100% agree that a mother is the best judge when it comes to her child and should follow gut feeling muting all the noise of advises around us.
I am heartbroken with you for your loss. After reading your story, am I even more grateful to the NICU staff and pediatrician who encouraged me to breastfeed, but insisted that my twins, born 7 weeks prematurely, start with preemie formula supplemented with breastmilk, slowly moving to breastmilk supplemented with high-calorie formula. I am so sorry that Landon didn’t have a chance to grow up with a mother who clearly wanted the best for him.
How difficult it must have been for you to write this, but so necessary to share. I praise God that when I had a similar situation with my second child, I had the experience of the first to know things were not right. The more formula he got, the less he cried. And he is now the proud father of my two beautiful grandsons. Sometimes the only reason God allows such pain in our lives is so that we can help others through similar circumstances. If you have helped even one person, your life, and Landon’s, were worth every moment. God bless you and your family!
Bless your heart.
Thank you so much for sharing your story of love, and loss. I know first-hand how difficult that is after losing my son to a late second stage concealed abruption. He was still-born, and 13 years in heaven now. We don’t want anyone to have to go through what we did, and eventually we need/want to talk about it to help make others aware. Being a midwifery assistant, the information you’ve shared is invaluable to keep in mind with our moms and babies getting established nursing. Just wondering, did baby Landon receive any vaccinations at birth.? Constant crying, agitation can be a reaction to some ingredients in vaccines. And I wonder if there was possibly more going on with him than just the nursing issues. Please give yourself grace, there were so many unusual factors involved with the PCOS, and other symptoms that don’t always directly correlate to the result you had with Landon. Peace and love.
How difficult this must have been for you to share. My heart goes out to you on such a precious day.
Jillian, the pain you are experiencing jumps out of your words and I pray that your heart finds peace. First I would like to urge you, as difficult as it obviously is, to shed yourself of guilt. As humans, we are imperfect and move through life having very limited information in the grand scheme of things. You were trying to do the very best for sweet Landon. Things went wrong, but life rarely cooperates with our intentions. Second, I would like you to understand that telling your story will help other fearful mothers who may be preparing to make the same mistake and it will help save a child’s life. By sharing this, you are honoring sweet Landon and being a great mom. God bless.
I am so sorry for your loss and pain. I breastfed both of my daughters and yes I was encouraged to do so inclusively but with that said it is up to the baby to tell you if they are still hungry it is so ubsurb that they bully parents into doing this. It is a choice and whatever that choice is being breastfed or using formula just love and nurish your unique little person. Send out prayers for your peace of mind.
I will forever be thankful that our pediatrician recommended supplementing my older son with formula when he was readmitted on day 4 of life — I’d successfully breast fed my oldest child without issues, but my milk did not come in well when he was born. He very nearly died from dehydration, too. I was able to continue breast feeding him and my next two children, but that was a very scary week for us. I share my story, too, to help other moms and babies who are struggling, and hopefully prevent stories like yours and mine from continuing. Love and peace to you.
This was almost us. Thankfully, when our son stopped breathing and turned grey we were eating dinner; a few hours later when we were in bed, our stories would be the same. CPR, ambulance, a week in hospital rehydrating and recovering. The hospital pediatricians told us we’d be shocked by the number of babies brought in because of midwife errors; ours told us his weight loss, lack of a single wet nappy in 5 days, and my lack of breast milk were all normal and we foolishly trusted them.
Thankfully that was almost 7 years ago and our son is a happy, healthy boy. I’ll never, ever get over what happened to him, though, and I can’t forgive myself for not asking more questions and blindly trusting the midwives. I’m so, so sorry for what happened to your son. I hope you find peace by educating others.
Hello Lynne, I am so sorry that happened to your son. It is nothing short of malpractice how these complications are hidden from breastfeeding mothers. Would you like to share your story with us? Christie del Castillo-Hegyi, M.D.
I have no idea how u managed to write this….. Ah my heart…… My God bless u and keep u…. Know that your little boy is safe in Jesus’ arms now…. U are one incredibly brave woman!!!!
This is exactly what happened to my daughter almost seven years ago when I was a first time mom. Everyone doctors, nurses, lactation consultants assured me she was fine. She was jaundice and had to go to the hospital for treatment, there it was found she was severely dehydrated and needed an IV right away. I don’t know what would have happened if we hadn’t gone to the hospital that day, within two days she was back to being a healthy newborn. I did not make the same mistake with my second daughter. Thank you for sharing your story ?
I am so sorry for your loss. I am a Lactation Consultant. Just last month, I gave out 12 supplemental nursing systems to my patients , in my private practice. I am also a specialist with pcos. A baby who breastfeeds for long periods of time is losing and burning too many calories. I now know that what I do in my private practice and the way I guide new moms is correct. A mother needs to pick up on signs with her baby that something is not right. If you need to supplement while breastfeeding, this story should tell all of you to please do it. You can get your milk supply up however, sometimes you need to supplement while breastfeeding.Buy a scale that doesn’t cost a lot and do a before and after weight check on your baby when breastfeeding. If you can, hire a lactation consultant for proper guidance. I cannot understand how something like this happened. If you don’t want to bottle feed, you can finger feed. I remember finger feeding a twin and he can alive again. I have saved many babies from going to the emergency room by properly instructing moms how to feed their babies. I pray this never happens to anyone else. Rest in peace sweet Landon.
Ohn Jillian! My heart is breaking – for Landon and for you, and for all who know and love you. I’ve never experienced a loss as devastating as yours and if I had I know I’d feel immense grief too.
But as someone looking in from the outside I can say please be gentle with yourself. You educated yourself the best you could, you did the best you could for Landon and you loved him the best you could. Nothing more is asked of us as parents. YOU did enough.
The medical profession is made up of humans which means mistakes can be made, despite all their education. I’m just devastated their mistakes were so horrendous and had the worst possible outcome for you and your son.
I’m so glad you were brave enough and loving enough to have another child. I hope and pray you can find peace in Landon’s short life and find a way to hold on to all the love for and from him, when you think of him. I wish you all the best for the rest of your life, especially around his other missed milestones.
Be kind to yourself, and remember how wonderful you did. It’s ok to keep enjoying life.
I’m so sorry. I wanted to let you know that you wrote 10 months in a couple of places. I’m not being picky but it confused me. I finally figured it out when I watched your video with the date of his birth and the date he passed away, and realized it should be 10 days. I think this is important because you are sharing an important story.
Again I’m so sorry.
So incredibly sorry for your loss and how easily it could have been prevented. My first son was born in Ireland at the National Maternity Hospital and they placed a huge stress there on the benefits of breastfeeding, but they did also offer plenty of support. He was a little baby but a natural birth and we were discharged 8 hours later to the at-home team – they came and checked on him every day, weighed him and watched a feed and spoke to us about how we were doing. On day 4 they were worried that he had lost too much weight and sent us back to the hospital for him to have blood tests done – we were immediately admitted and the first thing the nurse on the ward did was give him a bottle of formula – he drank 70ml so was obviously starving. I was so upset, thinking I’d failed him, and they were so incredibly supportive – told me that breastfeeding is hard work and he was only small, he just wasn’t getting enough of what he needed. We were kept in for three days and I would breastfeed, then feed him expressed milk, then formula if he was still hungry, then pump for the next feed, and we were discharged only when he had regained his birth weight. Support at home continued and eventually we weaned off the formula, then the expressed milk, and just kept up the breastfeeding. He is nine now. When his brother was born later the same thing started happening (he was small, too), but this time I recognised the signs myself so we started topping up after feeds and he was fine. Yes, all things being equal and in an ideal world, breast milk is the best thing for your baby, but first and foremost they need food, and I will forever be grateful to the nurses who taught me that. So, so sorry that you didn’t get the same support and heartbreaking that we keep shaming mothers for formula-feeding their babies. Fed is surely always best.
Thank you so much for sharing.. my heart literally broke reading this. I relate so much to your story. I wanted nothing more than that bond that comes with breastfeeding. For some reason that 11 lactation consultants and 4 doctors couldn’t figure out, it was extremely painful. The pain never went away. It was so so painful. I noticed about 2 weeks in he was unable to even try to feed and would sleep so deeply that I’ve cubes on his skin and prices to his feet wouldn’t wake him. The pressure from every where was so strong. I was also neve told of the signs of a starving baby. Everyone said I was latching him properly. I even let them check for a tongue tie and put a camera down his nose to check his throat to see if there was an issue. Man, do I wish I had let it go sooner. Luckily the 12th lactation consultant came into our home and noticed right away he wasn’t right. She asked us right away if we had a fast flow nipple and bottle to get some formula into him asap. It took a bit for him to perk up and then he just chugged and chugged. It scares me to think what could’ve happened had she not been the one to come to our home that day. I still wish I could’ve exclusively breastfed but this actually makes me accept the situation more.
I so wish there were more consultants like her, that don’t pressure and realize fed is best. I think there needs to be a lot more education on what signs to look for AND that this is even a thing! I had never been told this could happen, and when you’re that exhausted it doesn’t even cross your mind. You and your family will be in my thoughts and prayers.. I’m so so sorry for your loss..
Thank you so much for sharing your family’s story, I wasn’t expecting to be shedding tears this early in my day, but they were tears for you all and tears for myself. I had to switch my daughter to formula at 3mths due to her not gaining anymore weight and constant crying and fussiness….I thought I had failed, I felt judged and even though I knew fed was best, it still sucked. Reading your story has made me realise that it was in fact the best thing for her, after her first bottle feed there was a difference, the next day she was a new baby. I am now successfully breastfeeding my son, 6mths in, and starting solids soon.
Thank you, thank you, thank you…..your words have brought me back down to earth and reminded me that fed is best and please know that Landon’s story will help so many people.
Happy 5th Birthday little guy!!!!
I’m so so sorry for your loss. The kind of pressure put on new mom’s to exclusively breastfeed is wrong. I had 6 babies and not one was breastfed. I tried with my first, but he wasn’t thriving, and I had to go back to work. I tried to pump but it was just too much stress. When my second was born I tried again but had severe anxiety about her nutrition. At that point I decided that my mental health was top priority so we went to formula. It saved my life. So for 3,4 and 5 I didn’t even try and my postpartum was almost nonexistent. When I had my 6th baby the lactation specialist came to my room and asked me if I needed any help breastfeeding. I politely told her no. He was my 6th and it hadn’t worked yet. So I asked for the bottle feeding info for a refresher. She told me that information was locked in her supervisors office. Luckily I had “what to expect the first year” at home and I could use it as a reference. It was hard. I was told to just take brewers yeast and that would fix it. That does not fix postpartum. I had a mom stop talking to me when she found out I didn’t breastfeed. I felt like less of a mom, but I knew my limits and I new my babies needed a happy mom. It turned out that my 6th had severe reflux and by bottle feeding I could ensure that he was getting the nutrition he needed. They are all grown now and all heathly and happy. Fed is best.
I am so sorry for your loss. I could have very easily been in this position as well. I had an emergency c-section. I have PCOS. And my daughter was diagnosed with failure to thrive. This hit so close to home. I am so incredibly sorry for your loss. He is beautiful and I wish I had some magic words to make things okay. But all I can say is I am so sorry.
This story is heartbreaking but I’m so glad it’s being shared so mothers know what to look out for.
My son was born at 37 weeks only weighed 5lb 13oz he latched on soon as he was born but by the morning he was struggling. I asked someone to help me as I didn’t feel like he was able to and the midwife came back with a bedpan with syringes and leaflet open at a page on hand expressing. She told me to give him a small amount (I won’t say the mls amount but it was not enough) whenever he wanted feeding of colostrum as his tummy was small and wouldn’t need much until my milk came in so I thought it was normal. I was discharged hours later without anyone helping me to latch him on. He would keep pulling off my breast and screaming so we would give him some from syringe. My milk came in on night 2 and by this time he wasn’t interested he wouldn’t wake up for feeds and wasn’t responding. Midwife called when he was 3 days old and asked if I wanted someone to do a home visit and I said yes because I was worried. She came out and said I could wait and see how he gets on or take him to hospital. I took him to hospital and found that he had lost 12% of his body weight and had hypoglycaemia sugar levels were 0.2. He was on special care and tube fed…. I was heartbroken.
When he was 7 months old he started having seizures and we took him into hospital and they did brain scans which showed he has infantile spasms epilepsy caused by brain scarring from hypoglycaemia from not feeding properly in his first days of life.
I blamed myself for a long time and I feel fear thinking about it and remembering how ill he was. My son will always be at risk of seizures and will always have to be on medication. He might need brain surgery in future if it starts to effect other parts of his brain.
I’m so angry with that midwife for what she told me. I needed guidance and support and help and she did nothing but give me a leaflet and syringes and send me on my way.
It’s awful I have so many regrets. I can’t imagine the pain you have gone through. Never blame yourself you were let down and it was not your fault.
Xxx
Molly, would you be willing to share your full story with us? Thank you for sharing.
Thank you for sharing your story. After I gave birth to my baby girl she cried and we had a terrible time feeding. The hospital wouldn’t allow me a bottle and instead gave me a nipple shield which they also shunned. When we went in for our check up she had lost over 2 lbs. From that moment on I gave her bottles and felt a shame and guilt that I couldn’t feed my baby and that I was starving her. Shame on the hospitals. Fed is best.
I am crying. Thank you for sharing your heart breaking story. My heart aches for you. When my son was 7 months. We found out we were pregnant. He lost weight and wasn’t getting enough milk. I was very upset I was pregnant as I was not in a good emotional state and really struggled with breast feeding. He had a nursing strike at 3 months until 4.5 months. Everyday we struggled. I persevered, We persevered. And then this pregnancy was threatening me giving my son the “best” source of food. I panicked and with the not helpful pediatrician pushing formula from day one, I finally and reluctantly gave in. I kept kicking myself ever since. If i was in a better state of mind I would have pumped through it and supplemented along with breastfeeding. I was angry. I was an overproducer. And we struggled to get here. My son was amazing at breastfeeding only for this to show up.
Unfortunately, my pregnancy ended in a missed miscarriage at 9weeks and we lost it at 12wk officially.
Your story reminded me to be thankful and forgive myself for supplementing. I can’t imagine how much harder it is to not know and to lose a baby already born. (I’ve had 2 miscarriages but that does not compare to what you experienced).
Thank you for your story. Thank you for helping us all. Thank you for your wisdom
I was truly touched and saddened by your story and your youtube video!! My heart truly aches for your family on the loss of your beautiful baby boy!! I hope your story helps other families so that they do not have to deal with the heartbreak you have experienced! May God bless you and hold his arms tight around Landon!!!
Thank you from the bottom of my heart for writing this article! I’m sharing it far and wide! I’m so very sorry for your loss! I had IGT and was encouraged by several lactation consultants to keep going that everything looked fine when it was totally not fine. This was very nearly my story, but we got him a bottle just in time. My heart breaks for you! I know you know this, but this was not your fault and could happen so easily to many of us. That is why I’m so grateful for your courage and bravery in writing this article. There are more Moms out there like you I’m sure. Thank you!
Thank you sharing your story. You’re incredibly brave for sharing it.
As soon as I read it I was reminded of my first born and this could so easily have been me.
Again it was a relatively natural birth, healthy bub and no reason why I shouldn’t be producing milk. I thought I had the perfect bub, always sleeping. A rogue weight reading meant we all thought she was doing well. Day 11 we realised she had lost a significant amount of weight as I was barely producing 5ml each feed. A rigorous change of routine with pumping after every feed, supplement with a bottle and going onto a prescribed drug to increase lactation saw my baby finally start to grow. It took 4.5 months of hard determination for me to experience my first let down. Even after that I was still only producing 20 to 30ml each breast. It took my baby 8 months to finally have that ‘healthy’ pudgy look about her. 9 years on there are still some photos that bring back that wicked feeling of guilt.
It took me 4 babies before my body finally started producing enough milk. Breast is best is great for those who can, but I love your message of Fed is Best.
I hope your story is shared around the world to all first time Mums.
I’m in tears. I am so sorry for you and Landon and I feel so helpless that there is no way for me to help, for me to get to turn back time and have you get to see your little man grow up as he should’ve been able to. I can’t even begin to imagine the hurt in your heart. Your story is as powerful as it is tragic. Thank you for sharing. I believe you probably have or will save lives by doing so. Much love to you and your family! <3
I’m so glad you shared your story! I had just graduated for RN school when I had my first child and Women’s Health Nurse Practitioner school when I had my 2nd. I worked with a lactation consultant every 2 hours for the first 10 days. I felt so much pressure from the hospital staff and had been told in both my nursing programs that “breast was best!” I was miserable. My first cried constantly and I cried every time I fed my 2nd. When her spit up was all blood from the ulcers created from her trying to latch on, I finally realized that breast feeding wasn’t working for me and my children. My 3rd baby got the bottle from birth and we were both perfectly happy! I’m so sorry about your precious Landon. I hope health care providers read this and realize that ,although breast feeding comes easily for some and works great for them, there are many Moms for whom it does not work and they should never feel pressured to conform to what worked for someone else! God bless you and your family.
Thank you so much for sharing this. I am 38 weeks along and this is so important to know – I’ll definitely be on the look out and won’t hesitate to supplement if needed. This must have been so difficult to share – I confess I could not watch the video because it would have made me bawl my eyes out, but looking at the photos Landon was a beautiful child. As many have said here, you can only do so much with the information you have, please don’t blame yourself, although I’m sure that’s harder than it sounds. Thinking of your little boy and you x.
Thank-you for sharing your story, Those are beautiful pictures of your son and you are a wonderful person.
This breaks my heart. I am so incredibly sorry Landon was taken from you in this way and that you have to endure this pain.
We weep with you.
Sweet lady I’m so sorry for your loss. Your story is heartbreaking. You are a good momma to get this information out to others! Many prayers your way from my family to yours. Jill Simpson
This could happen to anyone. As a soon to be first time mum I had no idea newborns weren’t supposed to cry much. I’ve heard so many stories of babies who cry that have separation anxiety.
Breast feeding is definitely a worry as you never know how much the baby has had. You weren’t to know.
On the other side of the coin many women perversely get criticized for over breast feeding.
It’s so hard being a woman and it’s not at all your fault. You’d only just given birth also! You must have been exhausted and yet you were constantly feeding him showing your love and caring for him.
Thank you so much for sharing to increase knowledge on this. I will definitely be looking out for this now X
I am so sorry. You are a very strong woman and mother who probably wishes she wouldn’t have to be. This is an agonizingly amazing story that none should have to endure. I wish you and your husband only happiness and love as you continue to heal from losing your son.
That must have been the hardest thing in the world to share. I couldn’t even read it all. You are a hero for reaching out and telling others. Such an important thing you are doing. You will save many children with your story. I’m so sorry you had to endure this heartbreaking loss.
This is so sad ?I feel your pain. I can’t imagine what you’re going through. I pray his little soul rests in peace now n I pray that you have the strength and courage to move on and be positive for Stella. You are a good mom and thank you for sharing your story so the rest of us can be aware. I honestly had no idea this could happen. May God bless your heart to ease your pain. Happy Birthday in heaven baby Landon ❤️May the angels keep you safe and happy ?
Jillian, I am so deeply sorry for your loss. I can’t imagine the pain you endured and what you have been through. My prayers are with you. Thank you for your selflessness in sharing your story. ?
Im so sorry for your loss ?
I had similiar experience with my 1st baby who just turned 5.
She would also (cluster feed) and even now those 2 words infuriate me.
She would be attached non stop and scream everytime i took her off for a quick dip thru the shower, change of shirt, toilet break etc. This was day and night.
After living in hell along with my husband i called my mum in tears and obviously distressed. I explained what was happening and i said i think i need to go to A&E as i felt something wasnt right.
Thankfully for us we went straight to the hospital were it was confirmed to me that my dear lil baby Matilda was starving underweight, malnourished and jaundiced. Luckily for us my daughter was rushed straight to SCBU were we remained for the next 3 days to get her weight up her jaundice under control and her feeds via a BOTTLE on track.
I remained breast feeding but i express breastfeed for the next 5.5 months. By expressing i could see via the bottle exactly how much milk she was getting.
I too when i had the concerns was told about cluster feeding and according to the breast feeding nurse we had great attachement and Matilda was getting fed properly and was gaining weight. It still crushes me to think of the day i found out the truth. I remember so clearly screaming in A&E im starving my baby while falling to the floor. The guilt is so immence.
Your story really touched me and while incredibly sad im greatful to read as no Mum or parent should have to endure such an unpreventable loss. Its a sad truth that Breast is best is pushed so strongly on mums. Im also all for the motto Fed is best. I strongly believe if your baby is fed and happy whether that milk be by the breast or formula it should not matter.
May you get some solace knowing you did no wrong you were clearly led down the wrong path and wrongfully guided by people that you trusted and should have known better.
My son was born 7lbs 1oz, he lost more than 10% of his birth weight and they still released him from the hospital, I gave him a bath the next day by this point 4 days old, he didn’t wake up, took him right to another hospital where the admitted him and put him on an IV and under the lights, they had me pumping every hour producing a max of 5ml a time, finally they discovered I had insufficient milk glands, I was not allowed to have a bottle until I got home. I thank God every day for my son who is now 9. I am so sorry for your loss
Dear Jillian,
I feel sorry for your lost. Landon was a very cute baby.
I have the same problem when I have my son. I’m a newby in mother world and I have no family around me, Only my husband. So no one suggest anything or so to me. 1st day my son seems drank good and he cried and cried. 2nd day doctor announce he got jaundice bcos he lost 4% from his weight lost. So he seems cant latch good and my breastmilk not so much. I was protest bcos he seems drink good for hours and sleep. Lucky in the hospital they offer me formula. So they gave me similac ready to use for my son. But since the bottle was sucks and it flow really fast so he choked. I was mad. So I feed him with spoon instead. Then I ask if I can borrow the breast pump so I can pump the milk instead and they said “yes we have and you can use it free”
Damn, why they didnt offer me the time they know I want exclusive BF but the milk doesnt go iut much? or when my son hv latching problem? Until they announce he got jaundice? I cried and feel bad about it. Glad they gave me the pump and I pump for him and combine with formula also.
Maybe first mom to be need to read about your story to learn from others experience. Since I have that experience, I always tell new-mom for what they should do. Feed the baby, get the pump, eat protein and lots n lots of soup so the breast will produce lots of milk.
This is so sad and exactly what happened with third baby. Inconsolable crying, wanting to be on my breast constantly, becoming increasingly agitated when not on me. I got told to swaddle her. She was worse. The birth center midwives gave her a bath to ‘settle her’. She screamed. It was horrendous. I rang my midwife and said she NEEDS to come. I needed help. Noone was listening. I knew this wasn’t right as she was my baby number three. She came an hour later, put a finger in her mouth – and it was bone dry. She was severely dehydrated and starving. My midwife immediately gave her sterilized water which she absolutely guzzled, then made a bottle (in secret because the birth Centre midwives would have frowned upon it!). She then slept contentedly for the next three hours! It still angers me that they pushed for breast feeding and made me wait as my milk came in when my baby was so distressed. This is such a heartbreaking story. Something new mums should be aware of though!
My heart goes out to both of you. No words can describe the loss of a child ❤️️
Thank you so much for sharing. Please know you’re helping so much. This would have been my baby too if a nurse didn’t “sneak” a bottle to us. I was furious when i found out they had them all along while my son screamed for hours and we all knew i had no milk.
This breaks my heart. My husband and I had a similar experience with our daughter, with a better outcome. My daughter was born healthy and happy and seemed fine for the first day. But that second night, she cried and cried and cried and we could not get her to stop. I fed what felt like continually and still she cried. I even said to a midwife at one point, is she actually getting anything from me, to which I was assured I was doing fine. The next day was her post birth weight check and she had lost more than 10% of her body weight. The nurses quickly realised that I had nothing to feed her with. They left the room and came back with a form to which I had to sign to say that I was ok with my child receiving formula. The nurse looked apologetic, as though the offer of formula was offensive to me. I signed the form immediately saying I would rather she was fed than anything else. The put me on a pump after that to try and stimulate my milk flow. I was attached to this machine for 20 mins, maybe more and they got 1ml of colostrum from me. We need to stop treating formula like it’s taboo, like we are some how a failure for using it. Too many women push themselves to depression just to fulfill societal pressure when all they really need to do is feed their baby. I’m so sorry for your loss.
I am so sorry for your loss. No one should have to go through the loss of a child. I have a five year old and Twins that are just about three. My twins are in such a better place. My five year old goes through all the firsts and I learn through all of them how to do it better for the other two. I also had trouble breastfeeding but everything said it was so much better so I felt horrible when I had to give a bottle. I could’ve been in the same scenario as you. I just want you to know you are not alone. We are all trying to figure out what is best for our children.
Jillian, I am so sorry for your loss. I am a mother who breastfed my firstborn, as well. My daughter cried a lot but I quickly developed mastitis and thank God for that. If I had not had that I would have never know she was being milk deprived. Once I started pumping to “keep the milk flowing through the treatment” I soon realized this saved my daughter. I was only producing about a half ounce of milk. I left my daughter on the formula and never looked back.
When I had my second child breastfeeding was not even an option. My advice to all breastfeeding mothers is to buy a breast pump and pump at least once a day while breastfeeding just to make sure you are sufficiently producing milk for your child. And let no one guilt you for supplementing with formula, if you need to!
I had a similar experience only I myself was in I.C.U. recovering from a traumatic birth, but thankfully I was in a hospital that EVENTUALLY said we should give some formula. I truly feel for you. My heart breaks reading your story and I hope your heart heals a little each day knowing that HE decided for you to be his mum, whatever the timeframe.. you were just as special for him as he was for you, and you always will be in his heart too xo