The doctors and nurses told Jarrod and Jillian Johnson that their newborn’s case was not that unusual.
Landon Johnson had been trying to breast-feed almost continuously since his birth days earlier — and screaming each time his mother pulled him from her chest. Just stick with it, the first-time parents were told; it will take some time to get the hang of breast-feeding.
But hours after the Johnsons took their son home from the hospital, Jillian found him unresponsive.
His skin was blue and, she said, when she picked him up, his body fell limp in her arms.
Jarrod started CPR.
Jillian dialed 911.
Landon was rushed to an emergency room.
But it was not until days after their newborn had stopped breathing — after his medical team was unable to resuscitate him and after he was put on life support — that Jillian Johnson said she and her husband learned what might have happened to him. A doctor in a neonatal intensive care unit told them he suspected Landon was so severely dehydrated that his heart had stopped beating, she said.
“It was really hard for me to comprehend at that point, because I had been breast-feeding him — ‘What do you mean he was dehydrated?’ ” Jillian Johnson said she told the doctor in February 2012. “I couldn’t wrap my head around it. I was frustrated with myself because, there were these doctors and nurses who kept telling me, ‘Just keep feeding him. Just keep him on the breast. You’ve got a great latch. You’re doing fine.’ ”
But she had no breast milk to offer him, she said.
Just 19 days after Landon was born, his parents made a heart-wrenching decision to remove him from the machines that were keeping him alive.
Then they watched their baby die.
Five years later, Jillian Johnson is speaking out about her son’s death, warning other mothers about breast-feeding in a blog post that has gone viral.
Although breast-feeding is considered the ideal way to feed a baby, she said, women should understand the risks — such as not being able to produce enough milk — and realize that there is nothing wrong with using formula in bottles.
“I want people to stop shaming each other,” Johnson told The Washington Post. “Regardless of how you feed your baby, just make sure they’re fed. It’s plain and simple.
“I want people to educate themselves,” she said. “You want to do what’s best for your kid? Fine. Breast is best, sure — as long as the baby is getting something out of it.”
Landon died of hypoxic-ischemic encephalopathy, or brain injury caused by oxygen deprivation; cardiac arrest; and hypernatremic dehydration, according to records from the Los Angeles County coroner.
Johnson, who lives in the Los Angeles area, declined to name the hospital where he was born or release any records.
Christie del Castillo-Hegyi, a physician and co-founder of Fed is Best Foundation, said she has studied Landon’s medical records. Castillo-Hegyi, whose nonprofit foundation focuses on infant feeding, noted that the boy was born Feb. 25, 2012, by emergency C-section because he was not getting enough oxygen during labor.
At birth, he weighed 7 pounds and 7 ounces but, by day three, he had lost 9.7 percent of his weight, she said.
Johnson described the ordeal late last month in a post on the Fed is Best Foundation’s blog:
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.
Johnson wrote that a lactation consultant told her Landon “had a great latch and was doing fine” but noted that she may have a problem producing milk because she had been diagnosed with a hormonal disorder called polycystic ovarian syndrome.
The consultant told her to take herbal supplements, she said.
The Johnsons took Landon home on Feb. 28, 2012. Early the next morning, on Leap Day, they found him unresponsive.
“We were both crying, But to watch your husband — he was squeezing me so hard it hurt, but I couldn’t pull myself away from him because he was bawling and praying that God would bring his baby back to him,” Jillian Johnson said in an interview, sobbing.
No one at the “baby-friendly” hospital where Landon was born told her this could happen, she said.
In the United States, more than 400 such hospitals believe that “human milk fed through the mother’s own breast is the normal way for human infants to be nourished,” according to Baby Friendly USA, an organization that implements the Baby-Friendly Hospital Initiative by the World Health Organization and the United Nations Children’s Fund.
Baby Friendly USA Executive Director Trish MacEnroe said the organization expects designated hospitals to help mothers bond with babies and care for them, which includes exclusively breast-feeding. When mothers waver, she said, hospitals should try to identify the obstacles and help mothers overcome them.
But, she said, it’s ultimately the mothers’ decision.
Regarding the case of Landon Johnson, MacEnroe said it was indeed tragic but added, “I think it’s really important for mothers to know that breast-feeding is safe, and it is the optimal means for infant nutrition.”
Because Johnson would not identity the hospital where Landon was born, MacEnroe said she did not know whether it was a “baby-friendly” hospital.
Medical experts say starvation caused by breast-feeding is extremely rare; in fact, the American Academy of Pediatrics recommends that babies exclusively breast-feed for the first six months, for a variety of reasons.
General pediatrician Andy Bernstein, a spokesman for the American Academy of Pediatrics, said humans are hard-wired to go several days without fully feeding. Typically, experts say, newborns can subsist those first days on their mothers’ “first milk,” known as colostrum, until their mothers’ mature milk comes in.
Bernstein said most pediatricians agree it is acceptable for newborns to lose up to 10 percent of their birth weight during this transition. But, he added, physicians must also consider any factors that could put mothers and babies at risk, such as being a first-time mother; having a long, complicated delivery or a C-section; or suffering from certain health issues, including some hormone disorders.
“I’m definitely going to encourage breast-feeding when possible,” Bernstein said. “We easily get the majority of our patients breast-feeding, but there is still a significant number of patients who, for a variety of issues, breast-feeding just doesn’t work out. As gung-ho as we are about breast-feeding in 2017, I think it has to be done carefully.”
Still, he said, “formula is very acceptable source,” both alone or to supplement breast milk.
But much more common is the societal pressure some women say they feel to breast-feed.
In an op-ed for The Post last year, three psychiatrists wrote that although the benefits of breast-feeding are backed by science, “the recommendations carry the force of a threat: If I don’t breastfeed, my child is more likely to get sick; if I don’t breastfeed, my child won’t be as smart; if I don’t breastfeed, I’m not a good mother.
“Here’s what not enough people talk about: Just as new babies are vulnerable, so are their mothers. And a mother’s mental health is crucial — not just to her, but also to her baby. A depressed and anxious mother isn’t able to provide the nurturing that her baby needs to develop and grow. And if that depression and anxiety is caused or worsened by the breastfeeding experience, breastfeeding isn’t worth it.”
Then there’s the physical pain some women say they endure to breast-feed their babies.
Johnson, Landon’s mother, said that during the three days she was constantly nursing her son, her breasts were sore and her nipples were raw and bleeding.
She was also hurting for her newborn; she felt that she was failing him, she said.
Despite the horror she lived through, Johnson said she is not against breast-feeding. She has given birth to two girls since Landon’s death and has breast-fed them both — supplementing with formula.
“I am not against breast-feeding; I am pro-breastfeeding,” she said. “That’s the one thing I don’t appreciate is everyone saying I need to stop being anti-breastfeeding. I am not. Honestly, if I was anti-breastfeeding, my kid would probably be alive.”
“I had no idea he was starving,” she added. “Oh my God — if I’d known that, I would have given him a bottle.”