In 2012, Jillian Johnson went into the hospital to have her first baby, a boy she and her husband — her high school sweetheart — decided to name Landon.
Nineteen days later, Landon was dead.
The infant suffered a brain injury from cardiac arrest, oxygen deprivation and dehydration.
Despite the fact that Landon spent hours on Johnson’s breasts, and, she says, that multiple nurses and lactation consultants told her the baby’s latch looked excellent, he effectively starved to death.
“What if I would’ve just given him a bottle?” Johnson lamented in a 2017 blog post she wrote for the Fed Is Best Foundation, which went viral and prompted coverage everywhere from The Washington Post to People.
Johnson later became a spokesperson for the foundation, which promotes safe infant feeding and fights what it calls the “pressure to exclusively breastfeed at all costs” (and has also been the target of some criticism). And she is an outspoken critic of the Baby-Friendly Hospital Initiative, a designation earned by more than 500 hospitals in the United States aimed at promoting breastfeeding. Hospitals must adhere to 10 steps, which include: Give infants no food or drink other than breast milk, unless medically indicated. The program was launched by the World Health Organization and UNICEF in the 1990s, and the United States-specific program is overseen by Baby-Friendly USA.
But Johnson insists that she is not anti-breastfeeding. She continues to share her story, and Landon’s, because she does not want anyone else to pay the price she did for having insufficient milk. (Johnson went on to have two more children, whom she fed through a combination of formula and some breast milk. She was subsequently told she had insufficient glandular tissue.)
HuffPost Parents spoke with Johnson about Landon’s story, and about the advocacy work she has been doing since.
Landon was your first baby. How were you feeling going into everything as a first-time mom?
I had a really good, easy pregnancy. We took all of the classes and I really, truly thought I was prepared as a new parent could be. Everything that I had learned really drove me to want to have him in a baby-friendly hospital. My husband and I heard so much about “breast is best” and the benefits of skin-to-skin. But it obviously didn’t go well.
What happened in the hospital?
I ended up having a C-section, which meant I was medicated, and that hit me pretty hard. I was exhausted. Because it was a baby-friendly hospital, he roomed in with me. And he didn’t sleep a whole lot. If Landon wasn’t on my breast, he was crying.
There were certainly points during my stay in the hospital when I was like, “Gosh, is this normal? Why is he crying so much?”
But they told me that he was cluster feeding, which is why he spent so much time at the breast. And they told me to keep putting him up there — that the colostrum they believed he was getting was enough.
The thing is, he would stop crying when he was on the breast because he was working to get the milk out. What I’ve learned since is that him working so hard to get the milk out was making him burn more calories.
No one seemed concerned that he wasn’t getting enough breast milk?
We were keeping track of his pee and poop diapers while we were there, like you do, and they were pretty normal. [Note: Research shows that diaper counts are not necessarily the best measure of milk intake.]
He was certainly losing weight while we were there, too. It was considered a “red flag” if the baby lost 10 percent of his body weight. But Landon lost 9.7 percent. So it was kind of disregarded, because “10” was the marker there was a red flag. [Note: It is typical for babies to drop below their birth weight in the days after delivery.]
So you went home two and a half days after he was born.
On our first night home — we’d been there for not even 12 hours — I found him not breathing. He was blue. My husband started CPR. A lot of things are still really blurry for me, but I know it took six doses of epinephrine to get his heart rate back up. He was rushed to the ER and he was so dehydrated, they had to give him fluids through his shins.
And he was transferred to the NICU?
Landon was on life support for a couple of weeks. He was perfect. He was beautiful. The only thing that wasn’t working was his brain stem.
We ended up taking him off life support when he was 19 days old. When the brain stem dies, everything starts to die in the skull, and his plates were starting to collapse into his head. That was our clear sign it was time to let go.
You got an autopsy after. What did it say?
We got the results maybe six to eight months after Landon passed away. It said that Landon went into cardiac arrest from dehydration.
You’ve put your story out there a lot. What has the response been?
I’ve learned I can’t read the comments because there are still so many people who are so pro-breastfeeding and anti-formula. I always say I’m not anti-anything. I have two daughters now who are healthy who were 99 percent formula fed (I breastfed and supplemented), and they’re fine. They’re better than fine. But I’m also not anti-breastfeeding. What I’m for is education.
Yes, it was my first child. And yes, the doctors and nurses should have helped me see the signs. But it still feels like the absolute heaviest personal failure.
It took me a while to be able to tell anyone the truth about what happened, and I started with just a handful of people. I mean, how awful does that sound? “How did your child die?” “Oh, he starved to death because I didn’t give him a bottle.” It was hard to admit that my child died because I screwed up. And yes, it was my first child. And yes, the doctors and nurses should have helped me see the signs. But it still feels like the absolute heaviest personal failure.
Did you ever think about giving him a bottle when you were in the hospital?
My husband, I will tell you, has not bounced back from Landon’s death at all. A few times a year he’ll tell me that he thought about giving him a bottle, but he did not want to do something wrong to his child. Because we were so brainwashed into, you do not give your child formula.
We were so exhausted by the time we got Landon home, that we missed the signs that he was starving. He was crying — and this is always such an awful, sickening thing for me to have to say — this particular cry babies can have when it’s pretty much their last cry.
But we were doing everything the books and nurses taught us, so we thought this is what it was. We just thought new babies cried a lot.
If you could design your ideal hospital experience for new moms, what would it look like?
I have two daughters now, and literally the moment they were out of recovery my OB came in and he talked to the different nurses and said, “This is what she’s gone through. I don’t want there to be an issue as far as breastfeeding. If she wants to give the baby formula, you let her.” Because the hospital where I gave birth to them had started the process of becoming baby-friendly.
I just think it needs to be personalized. What does each mom need? And what does each baby need? How can we help them get there? There’s so many techniques hospitals could be using to help breastfeeding be more successful, instead of just sticking to rigid protocols. I think that’s what scares me.
Your experience with Landon is tragic. What do you want other parents or parents-to-be to know?
The biggest thing, I think, is that you really have to be your baby’s advocate. Constantly ask for things to be checked, and don’t be afraid to raise any concerns you have.
And make sure you have a support team, whether it’s your partner, or your mom, or a friend. The most important thing is to have a baby who is healthy and fed, and to have a healthy-minded mom and dad.
This conversation has been edited and condensed.
This article originally appeared on HuffPost and has been updated.