A woman whose baby died from accidental starvation 19 days after he was born is speaking out about her experience and his death.
Jillian Johnson went into the hospital in 2012 to deliver her first child, but barely three weeks later he died from a brain injury that was the result of dehydration, oxygen deprivation and cardiac arrest. The baby, Landon, had only fed at Johnson’s breasts per the instructions Johnson and her husband received from educators and medical personnel.
“We took all of the classes and I really, truly thought I was as prepared as a new parent can be,” Johnson told The Huffington Post.
Johnson, now a spokesperson for the Fed is Best Foundation, never gave Landon formula and had no idea her child wasn’t getting enough milk. She told The Huff Post she regrets succumbing to the pressure to exclusively breastfeed. Johnson wanted to share her story and educate other parents so no one else experiences the nightmare she went through.
Baby Landon was born at a designated “baby-friendly” hospital, which means the facility promotes breastfeeding and doesn’t feed babies anything other than breast milk unless the staff is sure it’s medically necessary. Over 500 hospitals in the United States share the same designation.
“Everything that I had learned really drove me to want to have [Landon] in a baby-friendly hospital,” Johnson said. “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.”
Johnson said when Landon was not at her breast, he was always crying, and she didn’t understand why he was constantly so upset. She said the hospital staff told her Landon was cluster feeding and they believed he was getting enough colostrum.
Johnson would later be told she had insufficient glandular tissue and Landon was starving.
“On our first night home…I found [Landon] not breathing,” Johnson told The Huff Post. “He was blue. My husband started CPR. A lot of things are still 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.”
Landon ended up on life support. He died when he was 19 days old.
Johnson said it took her a while to tell people the truth about how Landon died, because she was so ashamed for not giving him a bottle. “Yes, it was my first child. And yes, the doctors and nurses should have helped me see the signs,” she said. “But it still feels like the absolute heaviest personal failure.”
Johnson said her husband, who had thought about giving Landon a bottle, but he was afraid he’d be doing something wrong, is still torturing himself over Landon’s death. The Johnsons were totally convinced they should never give a newborn child formula.
“We were doing everything the books and nurses taught us,” Jillian Johnson said. “So we thought this is what it was. We just thought new babies cried a lot.”
Johnson said she isn’t anti-breastfeeding, but feels hospitals should be more in tune with a mother’s and a baby’s needs. “I just think it needs to be personalized,” she said. “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.”
When The Huff Post asked Johnson what she wants other parents to know, she said it’s imperative parents be their baby’s advocate, to constantly ask questions about how their baby is doing and to not be afraid to raise any concerns.
“And make sure you have a support team,” she said, “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.”