Woman says her 19 Day Old Son Died of Accidental Starvation due to Pressure to Exclusively Breastfeed

After losing her son five years ago to accidental starvation, Jillian Johnson is now advocating for proper feeding of newborns whether it is breast milk, formula, or a combination of both.

Her son, who died at 19 days old, suffered cardiac arrest 12 hours after he was discharged from the hospital.

Jillian told PEOPLE Now she feels the pressure from her baby-friendly hospital to exclusively breastfeed her baby became too much, leading to him not getting enough colostrum (a mother’s early milk) in the first few days after he was born.

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.

“We had chosen to have Landon in a baby-friendly hospital — that means that everything is geared towards breastfeeding. All the classes that we took, whether it was breastfeeding classes, we had birth classes, we had Lamaze classes, all of them still pushed breastfeeding.

I can’t even say that pressure is the right word. Everything was pushed so hard, you felt brainwashed. You felt like you were a horrible person if you gave your baby a bottle, and you wanted to do everything you could to make sure that your baby was breastfed and not given a bottle,” Jillian said.

Speaking on the grief she felt after losing her son to what would have been easily prevented, Jillian said:

It’s really not something I could put into words for somebody else to understand if they haven’t lost a child, but there’s a hole. There’s a hole in our hearts. He can’t be replaced. He would have been 5, he would have been starting kindergarten this year. The holidays are really hard because, what would he dress up as for Halloween this year? What would we have gotten him for Christmas?

There’s nothing wrong with giving your child a bottle. In the end, what would you rather have – a child that passed away because you did your best to breastfeed him? Or would you like to raise your child, because you had no fear and gave the child a bottle? There is nothing wrong with supplementing. It comes down to making sure that your baby is getting everything that they need, even if it’s the first few days of life. I know women who have had to give them a bottle for the first few days and they didn’t have to give them a bottle after that.

Jillian says she has two children now – Stella, almost 4, and Aliona, 18 months, adding that that they were fed with both breast milk and formula.

In a blog post for a non-profit organisation Fed Is Best, Jillian wrote about her experience to help educate parents who may feel similar pressures to exclusively breastfeed.

“I just want people to educate themselves so they don’t make the same mistake I did. I couldn’t sit by any more and have another mom feel what I feel every day. I don’t want any parent to have this hole in their heart. Nothing can fill it,” Jillian said.

“If I had given him just one bottle, he would still be alive,” Jillian titled the blog post.

Read excerpts here:

Landon was born in a ‘Baby-Friendly’ hospital. (What this means is everything is geared toward breastfeeding. Unless you’d had a breast augmentation or cancer or some serious medical reason as to why you couldn’t breastfeed, your baby would not be given formula unless a prescription was written by the pediatrician.)….

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

….Landon cried. And cried. All the time. He cried unless he was on the breast and I began to nurse him continuously. The nurses would come in and swaddle him in warm blankets to help get him to sleep. And when I asked them why he was always on my breast, I was told it was because he was “cluster feeding.” I recalled learning all about that in the classes I had taken, and being a first time mom, I trusted my doctors and nurses to help me through this – even more so since I was pretty heavily medicated from my emergency c-section and this was my first baby. But I was wrong. I’ve learned I have to be my child’s number one advocate….

….Did you know newborns aren’t supposed to cry all the time? They’re supposed to eat and sleep and dirty their diapers. I had no idea that he was inconsolable because he was starving – literally. And when a baby is only on the breast, how do we gauge how much they’re actually getting out? Sure, there should be wet and soiled diapers, and weight checks, right? And where is the limit as to weight loss and a minimum for the diapers changed? ….

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

After receiving a brain MRI, the boy was diagnosed with diffuse seizure activity on EEG, the consequence of severe, wide-spread brain injury. The MRI also confirmed brain injury consistent with Hypoxic-ischemic Encephalopathy, that is, oxygen deprivation due to low blood pressure from dehydration and cardiac arrest.

Following her blog post, Jillian said there’s has been “a lot of push-back” as to why she is “anti-breastfeeding”

“We’re not anti-breastfeeding. If we were, our baby would still be alive. There are women and even their husbands who have come out and said, we went through this. We maybe didn’t lose our baby but we had to have our baby readmitted to the hospital, or it came close.

When I say parents educate yourself, I’m talking to the dads too because you can’t not listen to those instincts. If you think something is wrong, push on those doctors and nurses as hard as you can to make sure, until you feel that you’re being taken care of, that baby’s being taken care of. Especially at that age, you’re the only advocate that baby has so you have to do everything in your power to make sure that baby’s taken care of.

As a community, we need to start taking care of each other. The amount of moms that have said, ‘I needed to hear this so that I could speak up,’ it’s amazing, because we shouldn’t be shamed for how we choose to feed our children as long as they’re fed,” she told PEOPLE Now.

Read Jillian’s blog post HERE.