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
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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.
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There are many ways you can support the mission of the Fed is Best Foundation. Please consider contributing in the following ways:
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- 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.
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- Shop at Amazon Smile and Amazon donates to Fed Is Best Foundation.
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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.
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Thank you for the bravery to share your story. I’m so sorry this happened to you. Honestly, when my first child passed, “this sucks” was the only thing that brought comfort to me. Know that your voice is being heard. Know his life IS special. Know your experience was not in vain. Know you tried your best and trusted your mentors. Know the pain lessens but never goes away; thankfully we never forget our Angel babies. My heart is with you. Love from a mom of an angel baby approaching 10years.
Thank you for sharing your story, we do have to be advocates for our babies but in those early days we are not always emotionally strong enough and I would urge people to make sure that they have a strong partner/friend/ family member to support them. I breastfed all my 3 but I was lucky to have staff who encouraged me to supplement my 1st son’s feeds with cup feeding, he was a big hungry baby who drank more from his supplementary feeds than the other babies who were exclusively bottle fed. Every baby and mother is different and I feel that you were let down in the worst way possible.
This story is just so sad and heartbreaking first I am so sorry for your loss myself losing a child as well under different circumstances but I can relate to the heartache the guilt and the what ifs but secondly I am so sorry that your nurses and doctors failed you they should have had you supplement especially that he was crying so much and continuously losing weight I’m a pediatric nurse and the weight loss is always a concern and reason to supplement its just so sad you had to lose your precious baby boy over such negligence I hope you are able to find some peace and know this wasn’t your fault being a new mom
My son lost roughly 12% of his birth weight while in the hospital after my c-section, the max they allow them to lose after birth. The lactation consultant sent me home with orders to pump and bottle feed him whatever I pumped, even if it was just a small amount and to bring him back the next day for a weight check. That night I realized he hadn’t had a wet diaper in a while (over six hours I believe, maybe longer) and his lips were looking extremely dry. He wasn’t crying excessively but I was worried enough that I finally gave in and gave him 2 oz of formula from some formula samples I had received in the mail and kept just in case it was needed.
The next day at the weight check he had gained 1/2 oz which was encouraging but I ended up breaking down in the LC’s office because I was so worried about what had happened the night before, worried that he wasn’t getting enough to eat. The LC encouraged me to bring him back the next day for another weight check after seeing how upset and worried I was. Luckily for us my milk came in a few hours after that first weight check and he was up 6 oz the next day. After that I produced more than enough milk for my son (who was a big eater). After reading this I wonder if that one 2 oz bottle of formula was what prevented this story from being our story.
I still believe breast is best (and will encourage breastfeeding when possible) but only if enough milk is being produced and baby is thriving. If not, then supplemental bottle feeding should be encouraged.
I am so sorry for your loss. So heartbreaking. I am a post partum/mom baby nurse at a baby friendly hospital, however we do not have to have a doctors order for formula it is a parental choice. I encourage breastfeeding but also empower mothers that it is their choice and they have to follow their gut. I never ever shame mothers for choosing to supplement and I educate parents on what to look for if they think bay isn’t getting enough. We can check a CBG any time we feel signs are there and our docs firmly believe in supplementing when needs are there. And when we do that I encourage mommas to nurse first to keep up breastfeeding and follow with bottle. It I bottom line a mothers choice what she does or doesn’t want to do not the doctor or nurses or lactation. Just so you now baby friendly shouldn’t mean (and doesn’t at our hospital) that parents loose their right to choose. Thank you for sharing your heart break and putting your story out there. Wish I could change your experience.
Thank you for sharing your story Jillian. I can definitely relate to this story! My baby Kaitlin was hospitalized when she was only 4 days old for 4 days from dehydration after exclusively breastfeeding. I didn’t know I wasn’t producing milk and I kept asking the staffs why she always wanna be on my breast every half an hour and always wanna eat as if she hasn’t eaten. The staff kept telling me she’s using me as pacifier and she’s cluster feeding. Little did I know she was actually starving bec I didn’t produce milk for her. I’m glad she’s a strong baby and fought hard for her life so we can enjoy her presence =) Mothers should have a choice and not feel guilty if they chose other alternatives besides breastfeed exclusively. New mothers should be educated about other alternatives as well and not just pressure them into exclusive breastfeeding.
Thank you Jillian for sharing your story and I’m so sorry for your loss. I wish I could have read your story years ago. I’m a mother of 4 and with each baby I went through the hungry baby experience for the first few weeks of their lives. In my case, it was delayed lactation and my babies cried and nursed non-stop. I wish more education was available about this for new mothers. Blessings to you and your family.
I have a thyroid condition and no one told me it could affect my milk production when breastfeeding. I was pumping day and night. At the hospital we were informed our son was dehydrated and we asked that he be given foemula. The head nurse reprimanded us and told us our decision to feed him formula was sabotaging our efforts to breastfeed. We told her we didn’t care and our primary concern was feeding our son. The pressure to breastfeed was immense and rthey treated us like Satan for our decision. Jillian I am so sorry for your loss but please don’t blame yourself.
How very very sad to read that you trusted the information you were given and it was wrong AND BULLYING, to deny babies the opportunity to feed on formula is an absolute disgrace, My daughter had a nightmare time with her first born, trying to breastfeed, eventually in the middle of the night, when we were sure he was starving, we made a bottle up and fed him, he was so very grateful,
No one can bring your darling baby back but by making your story public, you have given us all the greatest gift of all, you have saved babies lives without a doubt,thankyou for being brave,God Bless,
So sorry to hear about your previous baby boy he in the arms of God I pray for your peace and strength to make though this hard time I pray that after your healing that you would have a beautiful baby somedayGod can do anything but fail????❤❤hugs??
This happened to my son in 1986. He was my first, and you just listen to the Dr’s and nurses. He was jaundiced at the hospital, and also lost 10% of his birth weight. I had trouble nursing, his latching, my low milk production… At that time , you weren’t even supposed to give babies water. My son survived, but has disabilities. I often wonder if some of his disabilities were caused by this. This is the first time I have actually read anyone else explain this. I wondered over the years, but if you asked physicians 25 years ago, they told you no, that couldn’t have caused these problems. I asked, and I beat myself up with guilt for years, and still wonder.
I’m heartbroken for you. Such a beautiful baby ❤❤
This sounds scarily familiar. I’m an adult nurse and it was only because I would never let an adult go for so long without weeing as my son did I ignored the midwives and gave a bottle. I was shouted at the next day for doing so but my son was happier. I still feel a bad mother for failing to feed especially when you hear the stories of those that battled through. Women should never be made to feel bad as long as there babies are fed. This should never happen and the poor mother has to live with it when it was the midwives and lactation consultants fault
Thank you for sharing!! Continued prayers for you guys!!!
I am so horribly sorry for what you went through!
I wanted everything to be natural with my first, but everything fell apart in l&d, resulting in an emergency C-section, which only fueled me to try harder to breastfeed her. I was in the hospital 6 days with her, and she had lost 12% of her birth weight by day 3, so they insisted I supplement. They gave me a little tube setup that I ran by my nipple so she would still latch, and I’d be stimulated, and she went crazy. I pumped after each feeding, but never got more than an ounce.
My milk simply didn’t come in.
I gave up trying and just bought some bottles by two weeks.
I talked to my doctor when I was pregnant with my second, so I was prepared, but the milk was barely better with him. He cluster fed, was put under the light for jaundice on day 2, and was being supplemented by our release on day 3. I pumped and nursed for two months, and supplemented as little as possible to increase my production, but got just under 2 ounces in my best release. I gave up around two months with him, as it dried up to partial ounces.
I never knew the correlation between my thyroid and pcos and milk production.
I am so grateful that there were awesome doctors, nurses, even lactation specialists there to help me with both of my babies. I felt like such a failure, but they assured me it happens for some women. No reasons why, it just does.
I so wish they had suggested supplemental feeding to you. That’s all it would have taken, just one person to see that fed is best, no matter where it comes from. I am so sorry for your loss. Please don’t feel guilty, you simply didn’t know, and honestly thought you were doing what was best for him.
Oh my goodness, your story has shaken me to the core. I am so so sorry for your loss. Thank you for your incredible bravery in sharing your experience. I am a doctor and will carry your story with me when I manage and advise my patients with a newborn. As a mother myself, my heart breaks for you. I wish you and your family peace and happiness.
You are very brave for sharing your story. My heart broke for you as I read what happened to you. There is no question in my mind that you have saved many lives by sharing your story.
Thank you
I cried all the way through your story, how incredibly brave you are to speak out about this, I have never understood why Mothers aren’t allowed to make the decisions themselves, I don’t remember all this big fuss about breast feeding when I had my babies, if you did you did, if you didn’t, no big deal.
I am so desperately sorry for the loss of your beautiful little baby, there are no words to cover the vastness of the loss a Mum feels at a loss of this magnitude, I just know that you shouldn’t blame yourself in any way at all, you acted in what you thought was the best interests of your little one. I guess as I’ve found with bereavement you too will know, the pain never goes away, you just learn to live with it.
Bless you, your gorgeous son, and your poor broken heart. I wish you all the best life has to offer, and may you look to your future with no trace of guilt, but just a lovely memory of a special little boy, who left too soon. Xxxx
First my condolences to you! I do understand as a new mother you were not educated on breastfeeding properly but I would say to all Mothers, trust your instincts. You should see colostrum coming out of your nipple and the baby will swollow and you need to listen to hear if that’s happening. If baby isn’t swallowing there’s a problem. Milk should come in before you leave the hospital or very shortly after upon returning home but the thick colostrum should be enough until then. Is it coming out, is baby swollowing? I can’t believe the medical professionals did not pay attention to his significant weight loss. He should have never been dolischarged in that condition. Im sorry you were so misinformed it’s hard to believe in this day and age. Trust your instincts Moms! If something doesn’t seem right it probably isn’t!
I am so sorry for your loss. My son is almost 25 now, but this could have easily been him. There were no lactation specialist to my knowledge. after a week-10 days he cried non-stop. He began to loose weight. Luckily our pediatrician had e follow up with a bottle. He sucked it in. We then realized that my milk just didn’t have the nutrients in he to keep him full and growing. By the time he nursed on each side, then had a bottle it was time to start over. I gave in to the bottle from necessity, and felt like a failure. I had no idea just how dangerous this could have been. Hope your story will help others understand that they are not failures, and to listen to their instincts!
Thank you thank you thank you!!!
Please do not blame yourself! Society has put so much pressure on us to breastfeed. We are expected to do things that sometimes our bodies don’t allow!!!
6 years ago I had a beautiful baby boy. He brought us so much joy. During labour we lost his heartbeat. I remember screaming at the nurse to cut him out. I begged them to open me up to save him. They managed to get him turned around and insisted I have him vaginally. His heart beat came back up and I remember thinking why? Why will they put him through this. When he was born in got the “breast is best” talk. I had already had a baby and knew that they would try this. I breastfed. I shouldn’t have. He was jaundice and lost almost a pound by the time we were sent home. I produced milk but not near enough. We have nurses who come check on you after you get home and he maintained his weight of 6 lbs 2 Oz for 4 weeks. Finally the nurse said to me “There’s no harm in bottle feeding. I think maybe you should try it” 6 years later you’d never know there was anything wrong with him. But me? I fell into a deep dark depression from it. I felt like I failed at being a mom because my boobs wouldn’t do their job and feed him.
I’ve learned that things happen beyond our control. We will forever be changed from it. Please do not blame yourself.
Dearest Jillian, My heart broke for you and your husband and precious Landon when I read your story. I will pray for you. I imagine the pain and guilt must be unbearable at times, but in my opinion the hospital and “medical professionals” that were supposed to be caring for you and your son should have been held accountable for their negligence. You were a young mother trying to do what was best for your baby, and they were putting pressure on you to continue nursing even though they should have recognized that your baby was hungry and they should have known to supplement with formula until your milk came in. You are not to blame in any way for what happened to precious Landon, and I admire your courage for sharing your story. Maybe it will educate others and save lives. I am so sorry for your loss. I know your precious angel baby will be waiting for you someday in Heaven, and I pray that will bring you some comfort.
Jillian – how could you have been expected to know? NO mother should be judged for her decision on how she rhinks is best to feed her baby – especially a first time mother. I decided to go solely formula and was judged for that! Not fair…as s new mom you do what you think is best. RIP little Landon.
Thank you for sharing. This gives us moms new perspective on the importance we place on breastfeeding. It is especially hard when nurses and doctors tell you that it’s normal for your baby to loose weight and to just count wet diapers so you know they are hydrated. I am so sorry for your loss but please know that sharing your experience has made a difference.
I’m so sorry for your loss. When our son was born in 2010, I intended to ebf, as I had been brainwashed to do. On the second day, the pediatrician told me I was starving my baby. It was so painful and raw to hear at the time, but someone has to say it, and it wasn’t going to be the nurses or lactation consultants! My milk never came in.
So sorry that “the professionals” let you and your beautiful baby boy down.
I read your story and it took me back to 6th June 2002 when my precious daughter was born, we already had a daughter who was 15 and a son who was 11, just the year before on 5th May 2001 our beautiful son was born asleep so this made our daughter our miracle, she taught us to smile again, she cried constantly and only stopped when she was on the breast or snuggled up in my arms.
17th July 2002 she feed she had a dirty nappy she looked into my eyes and then closed her eyes and died in my arms at 5 weeks 6 days. She was in excellent health according to her Dr’s her post mortem showed complete heart block, she’d had a massive heart attack in my arms, she had an old heart (that’s what the coroner said);myocardial fibroelastosis to this day I don’t fully understand why.
God bless you hun I understand your pain anger ect but we are different our losses are our losses devastation for life . I’m with you in my mind and my heart xxxx
Thank you for sharing jillian. i am sorry for the lose of your son. I had my son 5 yrs ago yesterday. I tried so hard to breastfeed for 2 weeks. My son did not cry much though and slept alot. However, after they told me he lost 8% of is body weight I told them we should bottle feed him even though I was breastfeeding because i didnt think he was getting anything out. The nurse told me that would be fine but i felt like a bad mom because my milk never came in. it took us nine years of trying before one day I took a test and it said we were having a baby. However 2 weeks after my son was born i almost died. i was 38 and in good health when I deliver our son. I had a stroke and the drs had no clue why. when my body swelled up so bad my dr told me there was nothing he could do for me because i was breastfeeding. He could told me to stop breastfeeding and gave me a water pill. Instead 2 days later i was on a ventelator and in a coma and the dr then told my husband that he wasnt giving me much hope to live. Then 3 days later I woke up and the first thing i said was where is my baby. He was at home with my mom and my husband had stayed 3 days with me at the hospital. It took me 7 months but for the most part i am back to myself. My son at the age of 2 was dignosted with autisum and thats why he didnt cry much. I am thankful that we decided that we would bottle feed him before anything bad happened to our son. i thank God every day for saving me and givien me the chance to raise our son. My heart breaks for you and want you to know that you are in my prayers. I know breastfeeding is the best thing for your child but moms should not be made to feel bad if they cant. I was told that i cant have another child because i could have another stroke and next time might not make it. Thank you again for sharing your story and pics of you and your sweet baby boy. God bless.
I too had issues with breastfeeding. My son was born at 35 weeks at 4lbs 15oz with an emergency c-section. He couldn’t get the suck, swallow, breathe coordinated so we stayed in the hospital for 5 days. Everyday got better but he would only eat for 10 minutes on one side and fall asleep. He’d wake up an hour later ready to eat again. I had enough milk for 3 babies they told me so I had to pump both sides each time. It tuned into an almost constant circle of feed, pump, clean the pump to feeding him again. He was sleeping a hour between feeding and crying when he woke up. I lasted for 6 weeks before I called the doctor and asked them what formula to put him on. They told me I should really stick with the breastfeeding because it was best. I started crying and told them I couldn’t do it anymore. They put me on hold and then came back with what formula to try. Within 2 days he was a different baby. Sleeping longer, gaining weight, not crying as much. I felt so guilty for starving him. I wish I would have know this Fed is Best then. I wouldn’t have waited as long. He is now a normal healthy 13 year old and I praise God for that. Don’t let yourself feel guilty -you thought what you were doing was best. Even though you move on, the pain will still be there and never go away but it willl get easier with time. I believe God is using you to share your story so it doesn’t happen to others.
You did not fail your child…… don’t ever think that for a minute. If you ask me there were other ppl involved that failed your child but not you. You were doing what you were told by the professionals. I know by reading this article that you loved and still love that little boy SO much. You never wanted anything bad to happen ?
Hi Jillian, thanks for your courage in sharing your pain openly to us. As a new mother myself, I can’t help but feel terribly sorry for your loss of Landon. Your courage to share your story serves as an inspiration to many new mums. I hope you find the strength to reduce the guilt you have been carrying. You don’t deserve to go through all these, all you wanted was the best for your child, like all loving mothers do.
Sharing this may help save another child. I too breast fed my first child and she nursed what seemed like 24/7 for two days. Thankfully, my mother -in-law was staying with us and she was a nurse. My doctor was one who believed in natural childbirth and breast feeding. Finally we gave her a bottle and she drank 4 ounces and slept for six hours. They said my milk was not strong enough and I was starving her.
My son was born 40 years ago. He wasn’t quite six pounds when he was born and I wanted to breastfeed. I tried in the hospital and it seem to be working pretty good. I was able to come home about 10 days later with my baby. He had jaundice and we had to take him to the hospital everyday to have his blood checked. I to the first week I brought my son home was constantly breastfeeding. He had got down to almost four pounds so my doctor said that he needed to test my milk I had some that was coming in after he tested it he said it was not nourishing or thick enough for my baby to get good nourishing milk. It was watered down and I was told to supplement with a bottle of formula. It was not my fault and nothing I did. It just happens sometimes. He also cried a lot. So I breastfed and bottle fed. He began to gain weight again. I to felt guilty that my baby was not getting enough food and I was starving him. So this has been happening for yrs.
I told LaLeche league back then I would do it’ my way. They told me I should give it a little more time and some babies take a little longer.
I was blessed to have a great Catholic Christian Dr. And I really trusted him and he was a family friend. So I breastfed and bottle fed my baby 18 months then.
I am sorry for ur loss. I really did not read much when my baby came I was afraid I would be really confused. I was blessed to have cared for newborns since 12 yrs old and babysat since I was 12. So my GOD prepared me well.
God bless y both u r in my prayers and ur angel.
Thanks for ur courage in sharing and passing on the info for others to learn from you. U r a brave and strong angel. Thank you and may HE watch and guide u through ur journey of life.
Thank you. For your bravery and kindness in sharing your nightmare in the hopes to prevent other families from having to go through the same. I lost my daughter at 6 to cancer.. And I get the guilt that haunts you. But I will tell you .. you are wrong. We aren’t meant to.. we aren’t able to know it all. It takes a village Jillian. And the village failed. Not you.
I hope you have lots of support and other moms of loss to support you.. but if you don’t I am here.
I sobbed reading your story because this almost happened to us. My son would latch and the lactation consultants said it looked good. I had good nipples (not inverted) he had a wide open mouth and everything appears good. His diapers were hit or miss and his poops were not becoming yellow seedy but my husband wanted to leave the hospital and he kept telling them they’re smearing yellow. He was already slightly jaundice due to assisted evacuation with the suction on his head. Well when we got home he just kept crying and suckling and crying and suckling didn’t matter the position I fed him. My husband would rock a screaming child for 1.5 hours. I couldn’t see how anyone could enjoy being a new mother and after seeing his diaper get bigger and bigger and he turning more jaundiced we took him in. His birth weight was 7# 10oz down to 5# 13oz in 5 days. The doctor told us it was from him tongue thrusting and not swallowing and another day and he would have been hospitalized. I had plenty of milk basically drowning the kid so that’s how it trickled into him. His urine output was low and red tinged and poop still meconium. So she sent us home with some ready to feed bottle and I was so stressed that I wasn’t able to feed my child myself I had my husband do it and for the first time ever I could actually hear him suckle and swallow and see all the right mouth movements for nursing. I broke down and cried to hear such a sweet sound.
To read your story and think that could have happened to us. My mom said how would a new mom or young mom with no guidance catch that and she was so thankful we took him in because she probably wouldn’t have, just thinking he was a fussy or colicky baby. I warned all my soon to be mom friends that it’s just not that easy to breastfeed and there could be so many different issues and don’t be afraid of formula. My son will be 3 March 22nd. I am truly, deeply sorry for your loss. I know the pain and struggle to feed your child, but I don’t know loss like you and your family. I will continue to share your story and mine. May his precious memories always bring a smile to your face.
I’m am so sorry for your loss. You are a great mother. Please don’t ever blame yourself. I have an 11 and an 8 year old. I cannot believe I happened upon your story. When reading it, I was astounded by the similarities my baby boy and your baby boy had. (One difference to note later in the story is that my baby was born 4 1/2 weeks early and weighed 5 pounds 12 ounces). We took him the er when he was 5 days old when I checked on him right not long after I laid him in his bassinet. He did not feel the normal warmth. I took his temp and was shocked that it was 95.6. I took it again. I immediately took him to the Er. I was so scared. I didn’t know what was wrong. After hours in the er and even a spinal tap to check for meningitis they diagnosed that it was failure to thrive which caused the hypothermia and also he had very high jaundice levels. It was all due to him being early and not having enough suction to get enough milk and everytime I thought he was getting lots of milk, he was actually burning more calories than he was getting, like you said. I didn’t know what I could have done wrong with the breastfeeding. I did everything exactly how they said to do it. After the diagnosis , being on the warmer to increase his temperature, the intake of fluids, and pumping my milk, being on the bilirubin lamp and a 2 nights in the hospital, we went home. I was so paranoid if he was getting enough even though I switched over to bottle. I kept a notebook of his intake and dirty and wet diapers. I weighed him at home multiple times a day. It was so, so, so scary. I felt like I had to defend myself to everyone who knew he had to go back in the hospital and tell them about the breastfeeding experience. I cried so hard in the er not knowing what was happening. I remember feeling like what had I done wrong and why no one had told me that a month early baby might have eating deficiencies. People had always said, don’t worry, they are getting enough. They acted like he wasn’t as early as they thought bc of his weight (they thought it would have been less being delivered at that time) And I had fed him almost continuously. I am so sorry. I will pray for you daily. Your situation could have been mine. I had a lot of unanswered of questions as I know you do. I encouraged all my frieds who were having babies to be aware of this. It was a situation I replayed in my head over and over. I could not get it out of my head for a very long time. I am so glad that you are sharing this for mothers to be aware. I would love to talk to you more about it if you would like. Prayers and hugs
My heart breaks for your and your baby boy. I’m so sorry you’ve had to endure such pain and loss. I have a 5 year old myself and it hurts deep in my heart to even imagine your pain. Thank you for sharing your story.
Your story has really hit home and I’ve found myself preoccupied all day since reading it. I found myself in a similar situation when I brought my daughter home from the hospital. She attempted to nurse all night, cried all night and was dehydrated. I remember her mouth and lips being very dry. She had jaundice (so she really needed to eat to get it out of her system!) so we had a Dr. appt. the next morning. They immediately gave her a bottle and she finally became peaceful and fell asleep. I had no idea that was an option and, like you, was following what I’d been told about exclusively breastfeeding. Like you, I had never heard anything about possible supplementation or even that it was okay if needed. Or even that it is often needed! I say that because I know so many others who have had similar experiences as well and whose children were hospitalized. If I hadn’t had that Dr. appt. scheduled, I fear what could have happened to my daughter. There are no words huge enough to express condolences to you after the greatest loss one can experience. Your strength to come forward and share your story, and even to be able to go on after such an immeasurable loss is amazing. You and your angel Landon are helping so many others. You are amazing. ❤️
erm. and your point is? #humblebrag much. maybe you can put your “successful” breasts stories somewhere else please. yes, i’m putting it quite brutally coz mummies like you annoy me to no end. always replying to heartbreaking posts like these with “ohhh i breastfed all ten of my babies until each of them went to college”.
This is reprehensible!
I’m SO very sorry for your loss, Jillian!
I had two children, both bottle-fed and now one of them is entertaining which law school she should attend.
I’m NOT saying that formula produces the smartest kids, BUT, I was unable to BF and shudder to consider the consequences had I tried to.
Again, my deepest sympathies to you.
This mother did nothing wrong. She was being advised by “experts” who are so caught up on their ideals that they failed to recognize a baby starving to death. For all the people who say breast milk is the only way, you are wrong. Do you know what lowers infant morality rates in third world countries? Infant formula and clean water. Their babies were starving from poor milk production too. My heart breaks for any woman who loses a child to a preventable cause.
Your story is heartbreaking. Thank you for sharing and putting things into perspective. There is guilt with formula, an unnecessary guilt. Sending love up to Landon and and a hug to you xx
I’m really sorry for your loss ? and thank you for sharing your story. It happened almost the same with us. I had a C section as well and because of that I had no milk in the first few days. I was in hospital and my daughter was cring so bad because she was hungry. I was continuesly holding her to my Brest but you could see she’s not getting anything. I was begging the nurses to give me a bottle of milk so I can feed her but they refused, saying that if I bottle feed her, she won’t take the brest any more. My brest was bleeding because she was trying so hard to get some milk out. She was born on a Sunday afternoon at 4 o’clock and she only had her first food on Tuesday morning. Fortunately for us, she’s a healthy, happy baby but I really find myself in everything that you write. It was a nightmare…. I’m really sorry for your loss and I know that now Landon is a little angel watching you and taking care of you!!! We send you our love ???
So so so sorry for your loss and you are brave… Happy 5th Birthday to you boy in heaven…?
this hurts my heart so much – i cry with you. but thank you so much for sharing this – i don’t know if this will ease the pain at all, but so much good will come out of what you have learned and shared. how else are new mamas suppose to know any of this especially when doctors and nurses are telling them to do the opposite? my baby girl had to be readmitted to the hospital for jaundice at 6 days old because i was essentially starving her as well – i didn’t know! i was told not to wake her and feed on demand . . . and so i didn’t wake her up to feed. and i didn’t realize her cries were cries of hunger because i figured she couldn’t be hungry so soon after i ‘fed’ her. so easily could my situation have ended in tragedy. and i can’t believe that in the 21st century, there is so little education on this. thank you for the work you all are doing!
I am so sorry for your loss. I know from experience how they make you feel when you give the newborn a bottle. My milk didn’t come in for 2 to 3 days after each csection. Thank you for sharing your story so others may learn from your tragedy. God’s peace to you and your husband.
Thank you for sharing. I wasn’t aware that something like this could actually happen (and that the medical providers did not take more precautions to prevent it). I am actually crying because it breaks my heart 🙁 I can’t imagine the emotions of grief, pain, anger, guilt etc. but I pray you can let go of the guilt. It wasn’t your fault, how could you know anything was wrong if those you trusted to be experts weren’t concerned? And also I thank you, for your courage in sharing and using your heartwrenching experience to bring awareness to other and hopefully prevent the same outcome as yours. Sending love to your family in memory of your sweet angel Landon.
When my son was born a month early, he had problems breast feeding. While still in the hospital, he lost several ounces while tried to breast feed. I knew it wasn’t working, even though the breast feeding community assured me he’d be fine. After a day and a half, I made the decision to give him a bottle. He started gaining weight and started improving. He is now 22, 6’1″ tall, strong and healthy. I’ve felt guilty (and been made to feel guilty) about my decision, but the proof is in my boy.
THANK YOU THANK YOU THANK YOU. My first daughter suffered through my breast milk having no fat content. I hadn’t left her, I didn’t know. At 6 wks, she still weighed her birth weight. We intervened & offered a bottle, she took it like she was starving. I didn’t know, until now, this is what was happening. She’s 25. Blessedly, she received enough that we didn’t face the tradgedy you did. Then, 3 years later I had identical twin daughters. Colostrum was fantastic. Early days I immediately pumped, they were too premied & weak to latch on. Milk was good! But then, my body stopped production gradually as we battled the diagnosis of one’s heart hole. She was fine, stable, but nurses beloved without latching on & the stress, my body shut down. I had also had a bed-ridden life threatened pregnancy. But as soon as the milk lessened, we began bottles. I’m so thankful I did. YOU and YOUR SHARING after 22 years have made me stop questioning that. My daughters are grown women. Perhaps they will bear children. I will SHARE SHARE SHARE this… Bless you, may you find peace, & PLEASE KNOW YOUR OPENNESS WILL SAVE LIVES. GOD BLESS YOU & GOD HOLDS LANDON SAFELY IN HIS HANDS.
I am very saddened to read this. My mother and mother in law breast fed their babies. Both were very pro breast feeding in a world that was just awakening to the importance of breast feeding at the time. The two of them were my support when I was pregnant with my first (42 years ago). At this time, I was reading about the benefits of it and made the commitment to breast feed. La Leche league was big and promoting all of the wonderful benefits to mom and baby, in the wake of a world that was so very pro bottle feeding. The birth was a little complicated; I also have a blood condition that causes anemia. When I brought my baby home, he was crying all the time and nursing constantly, as he had been in the hospital. They told me my milk had not come in but that the colostrum is healthy. My milk would come in within a couple of days. But I was not told not to give a bottle and the nurse actually gave him a bottle while I was sleeping.. My mother in law (who also happened to be a nurse mid wife) did not mince words. She said, GIVE THAT BABY A BOTTLE!! HE IS STARVING!! You don’t have enough milk.Now this was common sense!! She was 100% right, no medical degree was needed for this assumption. She got a bottle and fed him! I could see for myself that this satisfied my baby. So I started feeding him a bottle after nursing, and felt no stigma, no shame or worry about my mothering capabilities. But we lived in different times back then, and this was common sense within the medical community as well our society. I am completely astounded by this story, angry at where midwifery and nursing has gone with the breast feeding craze. But feel that this is another sorrowful example of how our society reacts to things. If something is deemed as good and the “educated” view point, we throw everything else out that was ever done in the past! Just as we had done in the 50s and 60s with bottle feeding over breast feeding!! You see this time and again and to me it is sad that a movement has to be formed in order to bring common sense back into our thinking. You see this not only in medicine and health issues but in our educational and political system as well. Common sense and gut feelings should not be over ruled to cow tow to what this trend or that dictates! No matter what the studies and research say! I am so very sorry for this sad, sad loss of this child’s life… there are no words to console this mother. Thanks for sharing. God bless.