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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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.
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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.
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I am a diabetic and something similar happened to us. I was not producing nearly enough breast milk but I was a new mother. Luckily the hospital I chose saw what was happening when my daughter lost too much weight and strongly suggested formula. If someone would not have told me I would not have known either. My heart goes out to you!
Thank God this group is around. My first born too was delivered in a breastfeeding friendly hospital and lost weight after birth. Two problems, I couldn’t produce enough milk and the other she was lactose intolerant and didn’t keep anything down. She ended up Jaundiced (the hospital initially got the incorrect results over the phone from the lab and her treatment for Jaundice was delayed 8 hours). After treatment they lost her blood sample and had to do a second. I recall many hours spent being observed by the nurses latching on and feeding and then expressing and feeding breastmilk in the bottle. They sent me home with a three hour regime with expressing afterwards. This coupled with the washing and sterilising meant I was only getting one hour of sleep at a time which clearly affected my ability to produce milk. When I could produce something because of her lactose intolerance she would throw most of this up. Doctors thought she had reflux and prescribed medication which did nothing until she was getting to failure to thrive levels. She was on formula by this stage too! No one had ever asked me if I was lactose intolerant (which I am) or ever considered it. It was only one day when I happened to see Soy formula in the pharmacy that it clicked for me and I bought a tin and never looked back! She started to put on weight and started achieving her milestones, finally! I was so angry at the hospital for putting so much unnecessary pressure on me and for risking my child’s health simply because they had a few ticks on a plaque in the foyer. After that I always went by the adage, ‘mother knows best’. My second child was given formula with no guilt. Being a mum is hard enough without the pressure from ‘professionals’.
Happy 5th birthday to your angel baby, Landon, and thank you for your bravery by sharing your story. Being a first time mother/parent is very hard and we should not judge others until we have walked in their shoes. I gave birth to a 28 week old premmie and was very fortunate to have very caring and understanding lactation consultants while we were in hospital, even after I was discharged and my baby was still in hospital. We did dual feeds pretty much from the time she was born until she was about six months old where she then had to go to straight bottle feeds. You weren’t to know that your journey with Landon would be a short one but I hope that in time the guilt lessens and that your heart becomes lighter and soars with the love and memory of your precious boy.
I am so dreadfully sorry for your loss of your beautiful little boy. My second child was on the breast all the time as well and I understand the pressure that they put you under to breast feed and really make you feel inadequate if you don’t. I put him on a bottle and ignored their pressure because I knew he wasn’t getting anything from me. They should stop this pressure that they put on new mothers and let them make the choice. I only hope you can get past this and with this post bring the attention to a lot of mothers and possibly prevent another mother having to deal with the loss of a child. Sending you love and sympathy ❤
Thank you Jillian for sharing the heartbreaking account of your beautiful little baby boy’s all too short life. My story could so easily have ended in a similar tragedy. My twin boys had only been home 3 weeks when the smallest became less active and not as keen to feed. I raised my concerns with the maternal nurse but was reassured all was ok. That night Sam missed a feed and kept sleeping. He didn’t have a temperature which I thought was a good thing. He was cold to touch – I didn’t know that because premature babies have poor body temperature regulation they are just as likely to drop in temperature as to have an increased temperature. I rang a health advice line and they said to take him to Emergency. By the time I got there Sam was non-responsive. The doctors attempted to do a lumber puncture three times but were unsuccessful. Sam spent a week in hospital. I am positive I had Post Traumatic Stress Disorder – I just played over and over and over and over in my head that I was to blame, I shouldn’t have let the nanny take the boys out for a walk in the cold weather etc. I particularly felt guilty that part of me welcomed that Sam was extra sleepy as this gave me a break from the 1-2 hourly twin feeds. I had no idea why he was sleepy – just as you Jillian had no idea that your little baby was dehydrated – I also thought I should have known – yet you had a huge number of health professionals who failed, despite the multiple risk factors you had, to pick up on what was happening. Our little Sam has classical autism and is non-verbal – the undiagnosed virus that he had is most likely not connected in any way to his autism but there will forever be that little kernel of doubt thinking that there is. I don’t know how or why I eventually stopped blaming myself (counselling helped a little) – maybe it was just time that helped lesson the image of my little baby as the doctors attempted to insert the lumber puncture. My thoughts are will you Jillian on this saddest of days. Be kind to yourself – you did everything right and were let down by the medical staff – you could not be expected to know more than the medical professionals.
I am so sorry you had to go through this, it so easily could have been my story but for my husband and one young midwife. The midwives bullied, shamed and harassed me because I couldn’t breastfeed….i cried buckets over it, my husband almost punched the head midwife for the way she treated me but thankfully next day that young midwife took the time to comfort and reassure me and leave me a bottle. I found out afterwards that i was never going to provide milk due to inverted nipples which I found out where inherited from my mum and her mother. I bottle fed both my girls and they never looked back. I could have screamed when I visited my sister-in-law a few years later who had spent 3 days crying and trying to feed her son. I insisted she get some bottle feed, he is now 18 and over 6′ so did fine with bottle feeding! Breast may be best but isn’t always possible or enough…i hope lessons were learned from your experience and will continue to be learned by you sharing your painful journey xx
I am a mother baby nurse at a hospital and we are pressured by management to encourage exclusive breastfeeding. I have seen babies that constantly nurse and cry. I always offer supplement and tell mom’s I will support their decisions. This breaks my heart. I’m so sorry that you went through this tragedy and lost your son. Thank you for sharing your story.
I wasn’t producing milk enough to feed my daughter but I kept trying. She was born with mild jaundice but was able to go home with us. I religiously had her on the breast and did my best to keep at it. Her jaundice ended up getting worse and, on a hunch, I began to give her formula. Her jaundice began to fade away, her strength increased and she began to dirty diapers at a normal rate for newborns.
I’m saddened that you had to go through this. People need to stop judging on how babies are fed. As long as their tummies are full, the “breast is best” bullies should keep their outdated opinions to themselves.
Thank you Thank you Thank you for having the courage to share your story!!!! I’m so sorry for your loss, your beautiful boy!!! I’m a L&D nurse in an area where some parents are strictly breastfeeding, no supplements, no matter what. We need more stories out there to back up our side of the story, IF your baby has too much weight loss, to low blood sugar’s, obviously in distress from not eating, hyperbilirubinemia, supplementation is NOT the worst thing ever!!! Thoughts and prayers to you for comfort, please keep talking, your message NEEDS to be heard!! God bless.
Thank you so much sharing. My heart goes out to you. This is not your fault. I feel like the hospital
dropped the ball though.
I am so very very sorry for your loss. I too was made to feel inadequate as I produced so little milk. I had all of the risk factors that you had. I can’t imagine the pain you must feel and my heart goes out to you. Xx
This is just a question about a comment I sent in earlier, this really isn’t a comment to post on this thread. But I didn’t know how else to reach someone to ask… I made a comment a couple days ago and I haven’t seen it post. It was long and it was sending thoughts and prayers to these parents and telling my story as a similar situation happened to my son but he got to the hospital in enough time. He is 11 now, but I could easily be in your shoes. Love and hugs
I am just wondering did it even come through. There wasn’t anything in it that it would have stopped it from posting. I would really like to share my story on here by it will take me a really long time to retype it all.
OMG! You are not judged! What pain and guilt you must feel. It is unimaginable. The old expression, “hindsight is a wonderful thing”, is so true. We have no idea what is happening at the time and in hindsight we see everything clearly. And it’s crazy that the people who we are supposed to trust let us down. I was also so trusting of the midwives, but very quickly it all changed.
This takes me back to 6 years ago. Even in desperation I called our Australian National Breastfeeding Support 24 hour hotline and the woman was so rude, telling me to just keep him on the breast, as if it’s so simple, why was I calling her. And by chance I spoke to a friend online who said, “just do what you need to do”, and it was what I needed to hear. I sent another friend (who was with me) to the pharmacy and she got me some formula and with the first bottle (only 20 or 30mL) my son settled and went to sleep. I was so shocked after 3 days of virtually constant crying. The next day the home midwife was horrified and carried on as if the formula was rat poison.
My son has struggled with a lot of speech and language issues, which simply couldn’t be explained. For a long time we thought that he had autism, but I always felt that perhaps there was some kind of brain damage. It made me think that it was like he had been exposed to drugs or alcohol when I was pregnant (though he wasn’t). Now I wonder whether it could be related to those first few days being so unsettled and simple starving. Thankfully he is now really picking up and is more on track to being a normal child with some mild residual issues.
This could have happened to me as well. I kept expressing concern that I wasn’t producing milk and everybody said it was fine. I was a first time mother and nobody set me up to a pump to see if I was actually producing milk and so I kept breastfeeding and got the “he’s cluster feeding” explanation as well. I had a C-section and my milk didn’t come in until day 4! Luckily, my son had jaundice and they said formula will help push out the jaundice and since I was so uneasy about not knowing if I was producing, I told them to please give him formula. It was not until a very young lady who worked in the nursery set me up on the breast pump that I realized I had no milk. I was starving my baby too and when I found out, I cried my heart out and felt like the worst mother ever. I am so sorry this happened to you and I can’t even imagine the pain you have felt and continue to feel. Just know that it was not your fault. Thank you for sharing your story so that it may be prevented with others. You are a strong and incredible person and this is truly inspiring. Praying for God’s healing for you and your family.
I am so sorry for your loss.
My first born was hospitalized due to dehydration after we followed no formula advice.
I had a section PLUS a breast reduction and was still counselled by midwives not to offer formula. For three days she screamed. We finally dumped the midwife care, went to a paediatrician who sent us straight to ER, where a urinary catheter was inserted…. no urine. She had to be rehydrated by IV. Formula is not evil. Please, people, do not believe that it will take days for your milk to come in after a surgical birth. You require the hormonal cascade of childbirth to begin breastfeeding… in many instances. I am so sorry for your loss.
So very sorry for your loss
Jillian, I am so sorry for the loss of your son. I had difficulty feeding both of mine, one had weight loss and jaundice. I vowed if we have a third I was bringing my own formula, nipple shield and pump! I am lifting you up in prayer, Jillian!
Thank you for sharing- there is so much pressure on new mums to breast feed and as you say you are none the wiser. I was in a right pickle about not being able to breast feed. I am so sorry for your loss and he is a beautiful little boy who will live long in your heart. Thank you for sharing and I have shared your story to in the hope that new mums will read and take note. Love and hugs x x
Thank you so much for having the courage and ability to share your story. My heart breaks for you. This could have been my situation if I wouldn’t have said my husband and I want to start formula when my son wasn’t latching well and I wasn’t producing much from pumping.
You only did what you knew, and you were being the best mom you could be.
Much love and prayers to you ❤
Your story brought back many painful memories. My sister had the same issues breast feeding as you did. We were blessed that my niece survived and is now a sipirited 9 year old. The journey was tough, I was accused of belng complicit in harming her, which couldn’t be further from the truth. Child protective services got involved and we were fearful she would be placed in foster care. For the first year of her life I was her only baby sitter and had to report if anything appeared out off the ordinary. I’m a teacher and so they fdeemed me safe after jumping through hoops. My sister like you was a first time mom and I had no children we had no idea this was even possible. Thank you so much for sharing other families need to know.
Im so sorry for your lost your stories tauched my hart. I have 2 children and I can only think how you must feel I will never be as strong as you are. You are a very strong person. Never blame yourself for what happened the Lord will always be with you. And remember that gourges boy looks down to he’s mommie
My 9lb baby girl was constantly crying and feeding, not wetting or soiling her nappies. I started formula and had a different baby. 7 years later I still felt guilty…until I read this. Thank you, I know I did the right thing for her. And I’m so sorry you felt powerless as a new mum, I’m so sorry for your loss xo
Thank you so much for sharing this. I am sure it must have been difficult to share but in doing so you have helped many who have and will go through similar situations.
I am very sorry for your loss.
I experienced something similar:.I basically starved my baby for four days because the health-care providers failed to give me proper advice on feeding. In England they are so obsessed with promoting breastfeeding that the bottle is seen as the alien enemy.
I had preeclampsia and some minor complications that led me to have a rough birthi. As I had lost a considerable amount of blood during birth, I was quite dehydrated and my milk didn’t come in until the 5th day..
My baby slept mostly during the first two days as he was distressed by the birth. Whenever he showed signs of hunger I would latch him and the nurses who came to check on us claimed that he was feeding well. It is only later when he gained full consciousness did I realize that he grew tired from the sucking and went back to sleep. Even then the nurses claimed that the baby was feeding well.
I took him home on the third day and he was terribly restless then on. I felt confused because I didn’t experience any milk flowing, but being a new mother, I had no clue whatsoever and put all my trust on the midwife who came in to check on us. Four days passed and on the 4th night, from being constantly restless, the baby started to cry so loudly and I kept latching him and he would try to feed and start screaming again.
My mother who was with us that night grew so irritated and accused me of starving my child, and I thought that the midwife knew better than my mother. I rang the NHS breastfeeding hotline a few times and they kept assuring me that I shouldn’t lose courage and I shouldn’t give the baby the bottle. My angry mother told me that she will never ever speak to me again if something were to happen to my son.
The baby cried often from 5 am to 8 am and my husband rushed to the supermarket and rushed home again with formula milk. It is only after that feed did the baby stop crying and sleep peacefully. Thankfully my milk came in on the 5th day and I started breastfeeding him from then on until he was six-months-old.
What happened to Jill could have happened to me. It pains me to read this.
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My first baby was also “tongue tied” but the pediatrician didn’t catch it. It wasn’t until the baby was 4 months old and I moved to another town and changed doctors, that I was told to wean him immediately, since he had lost a pound between the 3rd and 4th months. My sister-in-law, a nurse with 3 children, kept insisting he was tongue tied and unable to latch properly. The new pediatrician, fed up with my nagging, finally sent me to an oral surgeon who confirmed the diagnosis. By the time his tongue was snipped, it was too late to breast feed, but with my next 2 children I was careful to supplement with a bottle.
I am so sorry for the loss of your precious baby. My sister-in-law almost had this same problem with her first baby. I had had two babies myself and she wanted to breast feed more than anything, but her baby was not getting enough food. He cried all the time and ate every two hrs. I kept telling her he shouldn’t be crying like that and that he need something more. She refused to give him a bottle. I was persistent in telling her and she finally took him to his doctor. Thank goodness his dr. Put him on a bottle and some formular. He begin to get satisfied and cry less. Your story is heart wrenching bc no one advised you to do something different.
I am so sorry for your loss <3 I thank you for your courage and the strength t has taken to write and share your very intimate experience… and while life is priceless, I hope you went after that damn hospital for compensation over your heart ache and sons life. THEY should have known better!!! I am so so sorry. May God comfort you.
I’m so sorry for your loss. Please don’t blame yourself I full understand the pressure we as women are put under to breastfeed, I physically threw out a lactation consultant from my house, when she was lecturing me on feeding my 10 day old baby, my 19 month old tripped on the LC bag and split both lips, she wrote in her report that I was ‘unwilling to listen to advise that breast is best’ my 19 month old needed her mum and anybody could feed my son a bottle, which I did and supplemented BF, but my milk supply ended at 8 weeks PP, and I can’t say that I was dissapointed or upset.
Once again, I’m sorry this happened to you.
Thank you for sharing your heartbreaking story. It has opened my eyes. I dread to think what would’ve happened to my baby had we stayed in hospital any longer. I had a similar experience reguarding medical staff care, after the birth of my eldest 20 years ago. I wanted to exclusively breast feed. My daughter was unsettled, fretting, crying, screaming, spent more time on the breast than off. Midwife told me same, reassured me everything was fine, inbetween times of bad latch positioning. I was engorged at times and by 3rd day very sore. She had lost over 10% of her birth weight. Many times, they had point blank refused to get baby formula and insisted, I persisted with breast. They wanted me to stay in threatening me about endangering my child. I told them they were the ones putting her in danger by refusing to get baby a bottle. My Mum will sort your mess out. At home I told my Mum and minutes later she left, came back with supplies and gave me a bottle, baby wolfed it down and she had her first 3 hour settled, sound asleep in nearly 96 hours. 4 months later, one of her heel prick tests came back positive. Unbeknown to us, at the time, no matter how well she took breast milk, there wasn’t enough fat concentrated in, for her to actually gain weight. 18 years ago Baby 2 was born really poorly, a medical mystery and spent first 12 weeks in hospital. With only a very poor latch. I expressed my milk for him to be fed by nasal gastric tube all 12 weeks. The only time he was given formula, he was violently sick and inhaled it into his lungs. One of many, scariest times in his short life that he nearly died. Every day, I am thankful for the chance to spend nearly 4 years with him. Baby 3 size caused traumatic birth for both of us. He was really sleepy and jaundiced. It took me about 4 hours of trying to get him to take his first proper feed, sucessfully breast fed after. Baby 4 born meconium and crying. First skin to skin cuddle I got covered. She was only soothed while I bathed her and inconsolable again when lifted out. I needed a quick wash down before I fed her. In my arms she shook her head towards me and lifted her head forward and latched straight on had first proper feed, successfully breast fed. Baby 5 born 3 weeks early due size. Experience similar to 1st baby. Unsettled, fretting, crying, screaming, spent more time on breast than off. Midwife advised same, no formula etc. Kept us in for poor feeding. Spoke to me like I was clueless. Blamed me for poor technique. Referred me to breast support. I got nothing better to do, so I spoke to bf support. I told her baby is like that saying, you can lead a horse to water but you can’t make it drink. She told me I was doing a fantastic job, that good I was making feeding too easy for baby. I left it for her to tell know it all midwife lol. More useful advice followed. I expressed off, after feed, fed as normal then topped up with milk in sippy cup. Went home 2days old, no mention of noticeable mild jaundice. 3 days lost over 10% body weight and midwife agreed she needed to go back to hospital for treatment. Home 5 days old gave up sippy cup, put milk in bottle, wolfed it down. Turns out, baby gave up suckling before let down came through and wouldn’t latch back on when full. I run out of stored milk at 20 days and had to give formula. Expressed for another week only ever made enough of my milk for 3 feeds out of 10-12 daily. 2 years later. She is the only one of my kids, I still a struggle to get her to drink only 4oz cows milk in morning and at night.
I read this, as a I sit here feeding my 2 month old baby girl. I had a hard time producing milk, and of course I fed every 3 hours and supplemented with formula when I felt she wasn’t getting enough. That was only after her 2 week check up we found out she’d lost more then 10% of her birth weight, and had jaundice. It scared the crap out of me, so now all I do is bottle feed, because I’m a stress case and so I KNOW what she’s getting. Reading your story, made me grateful for doctors that were educated enough to advise me to supplement. My heart hurts for you, no mother should have to endure losing a child. My heart goes out to you and your sweet baby boy. God bless. Thank you for bringing awareness.
I am mom to a 9 year old boy. My first and only child. I had him at 36 years old. To this day I carry guilt that I “starved” my son for 2 weeks. He cried all of the time, fed all of the time. He latched on fine and gained just barely enough weight to sustain. Doc’s were telling me what to look for. After just under 2 weeks I called my family in tears that I can’t do this. That they either needed to take him or I needed to drive us off a bridge together. I could not live like that anymore. The constant crying. The constant feeding. No sleep!! I hadn’t showered and I was recovering from a C-section. My mom said bring him here. We’ll figure it out. I went to her house and had a rare moment of him sleeping a light bulb came on. My brother drove to my apartment and got the tiny formula bottles that the hospital gave me when I came home. When my kiddo woke up… Crying of course…He drank 2 of those bottles, burped and slept for 6 hours!!! I bought a pump and in 10 mins I got barely one ounce of milk. He was STARVING!! I was done with the breast that moment and bottle fed. He gained weight immediately and slept through the entire night at 3 weeks old. I still carry that guilt. It never leaves.I am so sad at your story. I’m so sad you had to go through that. You are not to blame. He is your Angel. God Bless You!
My daughter Kelsey passed away in 2007 she was “too weak to eat” and in the end I got no real true answer. Thank you for being so brave to tell your story. (((HUGS))) and Happy Birthday Landon. I always say it’s always always a day to be thankful for. The horror hadn’t began. Things like this make me wonder.
I am so very sad and sorry that this happened to you and Landon. I do understand the pressure. When I gave birth to my eldest 16 years ago I had the misfortune of doing it during ‘National Breastfeeding Week’ in the UK. They locked me in the hospital for 3 days to force me to establish breastfeeding. But she didn’t want to be breast fed … so my husband had to sneak bottles into the hospital and we had to sneakily feed her with bottles like criminals. I’ve had 5 children now and it’s always been the same way. The breast is fine for the first 2 or 3 weeks but after that the child is on literally all day long. They suck for hours. I can feel there’s very little there to begin with and then they are sucking away for ages, pointlessly on nothing … so eventually, after weeks of this performance I give in and give a bottle which they guzzle in 20 mins and then fall asleep all happy. I see so many people on the internet and in papers making out that breast feeding is natural and it’s some sort of form of abuse to bottle feed your baby … and there’s no excuse to bottle feed. I’ve felt like somewhat of a failure of a mother and female in general for never making it past a few weeks without a bottle … because it feels like feed the bottle or sit there all day while your baby sucks and starves. This article makes me feel like less of a failure of a mother, and quite frankly there ought to be a lot more awareness of what’s been mentioned in this story and a lot less sanctimonious preaching about ‘breast is best’. I agree, fed is best!
I am so sorry to read about your heartbreaking loss of Landon. We too have a similar story of the “breast-feeding Nazis”and a newborn, full-term, healthy weight baby who wasn’t feeding terribly well and became ‘sluggish’, sleepy and jittery. Not one of the midwives charged with our care considered these signs to be alarming – as they should have – and he ended up severely (unrecordable) hypoglycaemic which led to a massive brain bleed. I am forever grateful that we didn’t lose him but…We now have a 13 yr old son who cannot speak, cannot feed himself or use the toilet, is visually impaired and severely cognitively inpaired and has uncontrolled and life-threatening epileptic seizures. It is a life-sentence for both him and my husband and I – and his younger brother. I have often said that just one bottle of formula was all it would have taken to save our son from this tragedy. ‘Fed is Best’ sounds like a fantastic cause and I wish you all the very best xx
Hi Jude, being the mother of a similarly brain injured child, my heart goes out to you.
What country is this in? It’s a very sad story, I know that in NZ no baby would be allowed to go home with a 9% weight drop in 3days!
And even in Baby friendly initiative hospitals if the baby isn’t getting enough food, women would be offered formula top ups alongside feeding, then additional formula bottles if needed before allowing that kind of weight decrease.
Also, diapers do absolutely correlate to baby’s intake of food. A trained midwife would know this.
I feel for these people- breastmilk is best for babies but only if the baby can get enough and the mother can cope and is healthy. A fed baby should always be the goal!
Jillian I just wanted to say my heart goes out to you and your family your son is a beautiful baby boy I promise his soul will be reunited with yours one day. You cannot hate yourself for something you were completely unaware of. As a human being it is sewed into our DNA structure to make mistakes it’s just part of who we are you should not worry yourself about the thoughts of other and the judgment they may cast upon you. Only yourself and your children can make judgments about you I do not know what it is like to experience that type of heart wrenching pain. I have lost a child but my child was not born yet. I went to the emergency room had a vaginal ultrasound done heard my baby’s heart beat only to go back the following Monday to have another vaginal ultrasound done to see an empty yolk sack. I lost my child after being put under extensive mental emotional stress by people represented by our states and counties all because they are employed by the state and county departments, but when they hear miscarriage come out of my mouth especially on the same day they paid me a visit it’s literally like I never mentioned the word at all. The way I see it no my child was not born but it was still a living soul waiting to make it’s entrance into a world it will never get to meet. Again I am so sorry for your loss but as parents we can not dwell on the what ifs or the maybe if I had because so much anger builds inside us to the point that it over flows into the ones we still have to look out for the ones that are the closest to our hearts and the ones that we love with everything in us I’ve learned that the hard way im still working on productive ways to sort out my sorrow and anger because I’ve lost both of my children all because people who are supposed to help families and carry many different names people who claim to only want what’s in the best interest for the children and the parents is nothing but deceit and evil hiding behind beautiful mask protected by complete immunity laws. Again I am deeply sorry for your loss. I can understand how much your soul and your heart literally hurts everyday.
Wow you have touched so many people. Very sorry for the loss of Landon….beautiful child. Nothing can take away the hurt of the loss of a child. Your braveness may have saved many lives and it’s thanks to what Landon has experienced. My heart goes out to you xxxxxx
I’m so sorry. I understand, to a small degree. My daughter exhibited extreme discomfort from hunger and thirst on day two after birth. I eventually, 32 hours after her birth, gave her a supplement bottle and she settled. The latch had been established so there was no problem resuming nursing like the lactation consultant we had paid during pregnancy had said there would be. With our Stella we were prepared and had the latch established and the bottles ready within 12 hours after her birth. Both daughters successfully and exclusively breastfed for their first five months and continued to nurse well into their second years. While in hospital with Stella, I had had a conversation with an academic pediatrician whom I asked why, in his opinion, was milk production delayed beyond what seemed the hunger and thirst limit for the babies? He said that a wonderful harmony exists between the expanding stomach of the infant and the increasing milk supply of the mother. I suggested that many factors must contribute to an imbalance of this natural arrangement, such as c-section delivery (I didn’t have the host of factors that you list above at my command), but he didn’t seem concerned. However, the memory of my first-born’s screams had too vividly imprinted on my instincts and I, despite the pediatrician’s obvious knowledge and trust in nature, supplemented Stella during her first three days. Thank you for giving me the chance, in this small way, to also voice what I consider to be a huge risk factor in newborns. I wish you all the best, C.
My heart breaks for you. Please don’t blame yourself, you gave Landon every single piece of you, he knew how much he was loved. RIP beautiful boy xx
Bless you. I love you.
I have been an NICU nurse and now a Pediatric Nurse Practitioner for a total of 37 years. I am also a mother of 2 adult children. I also was convinced that breastfeeding was best, however after struggling and failing to adequately breastfeed my children they were both bottle fed from about 1 week on. I’m so distraught to read this story because although I know the adage these days has been Breast is Best it isn’t always that simple! I feel that we portray infant formula as if it is poison and it is not!! Breastfeeding is great when it works but it is not for everyone, whether for personal or physiological reasons! There are advantags to bottle feeding with one on the most significant being the ability of the father to participate more fully in the infants care. What a baby needs most at birth is to be FED, cuddled, loved and secure (with a clean diaper of course). So let’s quite selling the Breast and start selling feeding our babies, no matter how it is done! YOUR LOSS IS MORE THAN ANY PERSON SHOULD HAVE TO BEAR! And I feel like we the medical community are responsible for this, since our patients look to us for advice and guidance. Formula will not kill our babies but quite evidently exclusive breastfeeding can!! You will be kept in my prayers and this will affect my practice in the future!
This may have been my daughter’s story if I hadn’t developed Reynaud’s in my breasts. Her constant “cluster” feeding in the first three days caused me so much pain that it was all I could do not to scream every time she latched. My husband insisted on giving her formula to give me a break. I tried to convince him that would be a horrible mistake. That I needed to keep breastfeeding to get my milk to come in (I also had been told that my colostrum was enough for her tiny stomach). He persisted and I let him make a tiny little bottle. I think we’d been told something about newborns only having room for half an ounce or something. He ended up making three bottles in a row – the last one he finally made a full 2 ounces because she was going through the others so quickly – and then finally she went to sleep and slept for 2 hours straight for the first time since she was born (I had 4 hours of sleep in the first 48 hours of her life because of her constant feeding). I started pumping and it took 6 days for my milk to come in and, even then, I was producing almost nothing.
Nobody warned me in the hospital that my pre-eclampsia and induction might interfere with milk production. Nobody asked me if my breasts had grown at all during pregnancy (they hadn’t). Nobody checked me for anemia after I experienced a retained placenta and lost more blood than is normal (it took a month before I finally realized there was something wrong with me and I wasn’t just some weak mom who couldn’t handle life with a newborn).
For three months I tried to pump and increase my supply. I felt like a horrible failure and grieved for months that I wasn’t able to produce enough to feed my child. Reading your story has broken my heart for you but also released me from the vestiges of guilt and regret that still remained in my mind. You did nothing wrong, mama. You were loving that baby the best you knew how. Perhaps your story will save many lives, prevent many traumas, and rescue thousands of women from depression, guilt, self-doubt, and grief. Thank you for sharing your story.
I wanted to share that my first child was actually a newborn that cried a lot. She didn’t just eat sleep and fill diapers. I did end up giving her bottles and breast— but she still spent a lot of time crying and fussing. The only point is that, having a second child who peacefully ate and slept and filled diapers showed me that each child is different. I write this in response to your “you should have known” part of your story. We each do our best with the knowledge we have and that’s all we can do. For all you knew your child could have been a crier like mine.
I am so heartbroken by your loss! There are no words that can be written to bring you comfort and for that I am sorry too. I pray that the Lord would be a balm to your soul and be a comfort for you.
I don’t know how the author found the courage to share this story, but so very grateful she did. Heartbreaking for her and her precious baby. This information will save lives.
Thanks for sharing. I am so sorry for your loss. My daughter is alive because she had jaundice and I was so out of it dealing with a botched epidural which resulted in them tapping my spinal fluid. They gave her formula in the nursery. I had her may 1st. We were released may 3rd. I had a baby shower on the 4th where wise mothers tried to help me breastfeed a screaming child. They encouraged me to pump or formula feed. I found out 2 weeks later she had tracheomalacia and couldn’t latch. I am lucky I was able to exclusively pump for 13 months.
I fully support fed is best. Hospitals especially lactation coaches need to pay more attention. I kept expressing concern that she wouldn’t hold her latch. They said to just keep her on the breast. I thank God for the women in my life and that I didn’t cancel a baby shower I was miserable at.