Instead of celebrating on what would have been her son Landon’s fifth birthday, Jillian Johnson took the time to open up about the death of her baby boy.
Fearing she may be judged or labeled a “bad mom,” Jillian steered clear of sharing the story of Landon’s life and death for a long time. But she hopes in doing so now, her story might save another child’s life.
In preparing for Landon’s arrival, Jillian and her husband spent her pregnancy doing everything they could to be ready for their precious son.
“We took all of the classes. Bought and read all of the books. We were ready! Or so we thought…” she shared on the Fed Is Best Foundation’s blog. “Every class and book was geared toward breastfeeding and how it’s so important if you want a healthy child.”
Landon was even delivered in a “baby friendly” hospital, which geared mothers toward breast feeding. And after an emergency C-section, Landon exclusively breastfed.
Lactation consultants assured Jillian that “he had a great latch and was doing fine,” but Landon was constantly fussing for his mother’s breast.
Jillian’s doctors evaluated her for difficulties with milk production, but her risk factors proved to be low, and they had Landon continue breastfeeding.
But the first-time mom felt like she couldn’t catch a break. Landon was on her breast for 15-40 minutes every one to two hours. And when he wasn’t feeding, he was constantly crying. When Jillian asked why that was, the consultants told her 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,” she wrote. “But I was wrong. I’ve learned I have to be my child’s number one advocate.”
In his first 24 hours of life, Landon nursed for more than nine hours. After being alive for just 53 hours—only two and a half days, the baby had lost 9.72 percent of his birth weight.
After just three days in the hospital, mom and baby were released to go home, despite being exclusively breastfed “with a mother whose milk had not come in.”
“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,” she wrote. “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.”
According to Dr. Christie Del Castillo-Hegyi, “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.”
In addition to starvation, Dr. Christie says a child who is “cluster feeding” may actually burn more calories breastfeeding than they receive in return. This often leads to fasting conditions and rapid weight loss like Landon experienced.
When the new family returned home from the hospital, Landon fell asleep while cluster feeding. He became unresponsive with no pulse.
After 15 days on life support, the newborn passed away.
“The best advice I was given by one of his NICU doctors while he was on life support is, ‘Sure breast is best, but follow with the bottle,'” she wrote. “This way you know your baby has eaten enough.
If only I could go back in time.”
It’s been five years now since Jillian lost her son for something that could have totally been prevented had she known to advocate for her baby. Today, she wrestles with the guilt of wondering what life would be like had she known.
“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.”
Jillian says she misses her son, and the life that could have been, but he taught her so much in his short little life.
“That little boy gave me ten of the most incredibly 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.”
Ultimately she hopes that sharing her story now—though painful and hard to reconcile—will help other mothers to know that FED is best.
SHARE Jillian’s story with a mama in your life, help spread the message that babies should never go hungry.
Visit fedisbest.org for more information.