The Scary But Rare Risk Linked To Exclusive Breastfeeding

Sometimes, breast isn't best. Doctors should get real about that.

UNICEF’s worldwide campaign to emphasize breastfeeding for infants will celebrate its 27th anniversary this year. In the U.S., this effort led to the growth of community breastfeeding support circles, more awareness about the benefits linked to breastfeeding, which include lower rates of diarrhea, infections, diabetes and Sudden Infant Death Syndrome, and officially designated “Baby-Friendly” hospitals that earn certification by encouraging breastfeeding as the norm.

In many ways, this global awareness campaign, sparked in part by high rates of infant deaths in developing countries due to formula mixed with dirty water or dilution of the expensive formula product, has been a success for American parents, who generally had access to safe water and enough formula to begin with.

In 1971, only 25 percent of American moms breastfed their infants. By 2016, 81 percent, or four out of five American newborns, start life on the breast, and 52 percent are still breastfeeding at six months.

But for some new parents who struggle to breastfeed at first, or who never manage to get the hang of it, the mantra “breast is best” can be judgmental and unhelpful. And in rare, extreme cases, the pressure to exclusively breastfeed has resulted in the accidental dehydration and starvation of infants who could not get enough nutrition from breastfeeding.

The latest parent to tell this story is Jillian Johnson, who five years ago lost her son after he became so dehydrated that his heart stopped. He spent 15 days on life support before dying.

In an emotional essay published by the Fed is Best Foundation, a parent-led nonprofit founded to push back against the social pressure to exclusively breastfeed, Johnson writes that despite multiple consultations with lactation experts and nurses, no one caught on to the fact that her son was hungry, and that she wasn’t producing enough breastmilk. Instead, she and her partner were discharged from the hospital two and a half days after Landon was born. After less than 12 hours at home, where Landon continued to cry, scream and attempt to feed, he went into cardiac arrest.

When Johnson had her second child, a daughter, she was puzzled that Stella didn’t scream and cry as much as Landon did. Nurses said there was nothing wrong with her, and that Stella was sleeping and eating as normal.

“It was then that I realized that it wasn’t normal for a newborn to cry as much as Landon did,” she wrote. “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.”

Breastfeeding isn’t right for everyone

Johnson’s story is shocking, and the last thing one would expect from a breastfeeding effort that aims to do what’s best for mothers and babies. Thankfully, it’s rare, but it’s important to acknowledge that exclusive breastfeeding simply won’t be successful for all mother-baby pairs, says Dr. Alison Stuebe, a maternal-fetal medicine physician and medical director of lactation services at University of North Carolina Health Care.

Health care providers need to know that insufficient breast milk is a real problem for a minority of women, and if it isn’t caught in time, it can be discouraging to the mother and severely dangerous for a newborn baby.

“I think everyone in the system needs to look at [Johnson’s] piece and say, ‘How can we create a safe system for supporting optimal feeding so that moms and babies who want to breastfeed can do so safely and successfully, and moms and babies who don’t want to breastfeed can have good support to do that and know how to do that safely?’” said Stuebe, who is not affiliated with Fed is Best.

Stuebe in the past has pushed back against Fed Is Best’s campaign for all parents to be warned about rare brain damage risks that can result from insufficient breast milk supply, writing that it could threaten the effort to normalize exclusive breastfeeding and unnecessarily expose newborns to supplemental formula feeding, which could jeopardize the establishment of a consistent breastfeeding routine.

Severe dehydration in newborns is rare but can vary according to region, she noted in a 2016 post for the site Breastfeeding Medicine, a blog for doctors writing about breastfeeding.

A 2013 study among U.K. newborns found about seven to nine newborns per 100,000 live births will suffer from dehydration as a result of insufficient breast milk, which resulted in no long-term complications. Meanwhile, among mothers in Turkey, where most families are sent home within 24 hours of the birth, severe dehydration affected 14 percent of babies. Stuebe noted in her post that 24 hours is not enough time to assess if successful breastfeeding has been established.

Experts need to change the way they talk about breastfeeding

Taking into account all the different variables and unexpected things that could go wrong with breastfeeding in a minority of women, health care providers need to be less strident in the language they use with new moms who have just given birth, are feeling vulnerable and want to do the right thing for their children, Stuebe said.

“There’s some proportion of moms for which breastfeeding just won’t work, just as there’s some proportion of babies that won’t come out vaginally, no matter what we do,” she said. “We need to be honest about that and point out that even if 100 percent of the milk doesn’t come from mom, she can still have a nurturing relationship with her baby at the breast.”

Mary S., a 34-year-old mom from Los Angeles, would have appreciated that approach from her clinicians when she gave birth to her daughter in 2014. Mary did what all lactation consultants recommended — she took a breastfeeding class through her hospital before birth and requested two lactation consultant visits at her hospital room after giving birth, during which she was reassured several times that “everything looked great.”

She even had a lactation consultant make a house call twice, and joined a breastfeeding support group through a local parenting store. The only hint she got that her breastfeeding plans might not go the way she wanted was during an OB/GYN’s physical exam the day after she gave birth, when the doctor examined her breasts and noticed that one of them didn’t seem to be making colostrum (a mother’s first breastmilk) yet.

On the fourth day after giving birth, Mary noticed her normally calm and quiet baby would not stop crying. She took her to the pediatrician and found out that her daughter had developed jaundice because she was starving. Immediately, her doctor prescribed bilirubin lights to treat the jaundice, and told Mary to start supplementing with formula milk. Once at home, Mary breastfed for 15 minutes on both breasts, then fed a bottle of formula, and then pumped her breasts to see if her milk would come in. She switched exclusively to formula after two months of this grueling regimen.

Now, three years later and about to give birth to her second child, there’s so much Mary wishes that she could have known about exclusive breastfeeding.

“I wish someone had told me along the way that it doesn’t always work out — that you can have a smart and healthy child even if you supplement or formula feed,” she said. “No one along the way recommended or even offered us formula until my baby was in desperate need of it.”

Still, health care providers should not treat all families as if they are at high risk for insufficient breastmilk supply, according to Elizabeth Smith, a “baby-friendly” coordinator in charge of breastfeeding education policy for the University of Utah Health Care hospital system. Instead, they should look for signals from the infant that feeding isn’t going well, assess a mother’s risk factors before birth and set up a care plan for new parents to make sure someone is following up with them after short hospital stays.

There’s no need to apply a one-size-fits-all approach to breastfeeding, as many hospitals have done in the past, Smith said. She pointed to a common but outdated misconception, which Johnson repeated in her blog post and said her NICU doctor told her as well, that breastfeeding sessions should be followed up with bottle supplementation to make sure the babies are properly fed. Unless a mother is at high risk of insufficient breast milk supply, or a baby exhibits signs of dehydration or starvation, there’s no reason to follow up with a bottle.

“We don’t want to go down that path, which is where hospitals used to be,” she said. “We as hospitals were sabotaging the ability for moms to have a successful breastfeeding relationships.”

According to Smith and Stuebe, there are several ways health care providers and parents can work together to make sure newborns are getting the nutrition they need in their first few days of life.

1. Watch for signs of dehydration in babies

To safeguard against accidental dehydration, health care providers and parents should monitor the baby’s weight and intervene with a bottle or formula if weight loss starts to approach 10 percent, monitor the baby’s alertness and keep track of the color of its dirty diapers (feces should go from black to green to yellow over the course of a few days), Smith says.

2. Assess risk factors in mothers

For mothers, risk factors for insufficient breastmilk supply include, but are not limited to, infertility or the use of reproductive treatments to conceive, premature birth, previous breast surgery and an inability to “hand express” breastmilk.

“Every mom should be taught hand expression,” Smith said. “If she’s having a hard time with hand expression and not getting a good result, then we want to assess her even more carefully.”

3. Make a care plan

After assessing individual risks of both mother and baby, it’s up to health care providers to come up with a plan to follow up with families after being discharged from the hospital ― as well as communicate that schedule with pediatricians, lactation consultants and anyone else involved in their care, says Stuebe. For some especially busy medical facilities, this is a huge logistical struggle, and sometimes systems can fail.

Parents should also feel empowered to inquire after lactation consultant visits and lactation outpatient clinics and reach out to breastfeeding support groups in their community, in addition to lining up all the doctor’s visits that occur within the first weeks and months of their newborn’s life.

This article was updated with additional information about Baby-Friendly hospitals.

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