It took mom Jillian Johnson five years to share the story of her son Landon's death; mainly because she was in so much pain after losing him, and also because she feared being judged. But now Johnson is opening up, in a blog post for Fed Is Best, about how Landon passed away from dehydration just days after his birth, and how she had no idea he was actually starving to death. She hopes her experience, while exceedingly rare, will save other families from going through the painful loss she did.
During Johnson's pregnancy, the first-time mom and her husband educated themselves in an effort to be the best parents possible. "We were ready! Or so we thought...." she writes in her post, adding, "every class and book was geared toward breastfeeding and how it's so important if you want a healthy child. 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.)"
After Landon arrived via emergency C-section, Johnson exclusively breastfed him, writing, "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."
But Landon cried all the time, too. Johnson says, "He cried unless he was on the breast and I began to nurse him continuously." Landon nursed about nine hours during his first day of life; nurses told her this was called cluster feeding. After about two days, he'd lost nearly 10 percent of his birth weight (note: It's normal for breastfeeding babies to lose up to 10 percent of their weight after birth) and although Johnson worried Landon wasn't getting enough milk, she trusted the medical professionals around her that everything was okay. Except it wasn't.
As Johnson recounts in her raw post, Landon "was starving – literally." Less than 12 hours after the new parents took their son home from the hospital (he was less than three days old), he went into cardiac arrest as a result of dehydration.
"And 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," Johnson says, adding, "This way you know your baby has eaten enough....if only I could go back in time." But she couldn't, and baby Landon ended up passing away after several days on life support.
Rachel Prete, M.D., a pediatrician with Arnold Palmer Hospital for Children in Orlando, told Parents.com that this is an "extremely rare case." Most of the time, doctors, nurses, and lactation consultants can help properly navigate new moms through numerous breastfeeding challenges, including low milk supply. In fact, most babies can thrive on even a small amount of colostrum (a thick, concentrated fluid that is often golden in color and typically comes in during late pregnancy), and it is very normal for a mother's milk to take a few days to come in.
Dr. Prete advises new moms to look for physical colostrum to make sure Baby is getting fed. "Moms should be able to hand-express some colostrum," she said. "A minimum of a teaspoon (or 5 milliliters) per feeding is enough." She adds it can take three to five days for a mom's milk supply to come in.
Ari Brown, MD, FAAP, founder of 411 Pediatrics told Parents.com that ”while uncommon, some women do not produce enough colostrum or mature milk due to a variety of underlying causes.”
"I am pro-feeding—plain and simple. I just want parents to educate themselves and stop shaming each other for how they choose to feed their babies,” Johnson told Parents.com.
There are warning signs that a baby may be dehydrated, which parents should be aware of. These include:
Dr. Prete notes that cluster-feeding is normal, but Baby should also have periods of feeling satisfied and sleeping. Parents should look for one pee and one poop on the first day after birth, two pees and two poops on the second day, and so on, she says.
Dr. Prete advises parents to follow up the next day post-hospital discharge with your pediatrician, who can assess baby's hydration status. And if you are struggling with breastfeeding, she says, "remember any breast milk is better than none." She recommends talking to your pediatrician to discuss if supplementing with formula is right for you and your baby. Finally: "Don't be afraid to ask for help."
We are heartbroken for this mom, and applaud her for sharing her painful story.
Melissa Willets is a writer/blogger and a mom. Find her on Facebook where she chronicles her life momming under the influence. Of coffee.