THE SEARCH FOR 'LIQUID GOLD': Some Arkansas families facing breast-feeding struggles turn to strangers

Barbie Graham holds her 7-month-old daughter, Egypt. Graham said she felt “beyond helpless” when she could no longer breast-feed her child.
Barbie Graham holds her 7-month-old daughter, Egypt. Graham said she felt “beyond helpless” when she could no longer breast-feed her child.

Alone, at home with her 3-month-old daughter, even commercials began to taunt Barbie Graham.

Graham, now 23, was new to motherhood, new to Arkansas, and an ad on her Pandora radio station echoed what she'd been told: The breast is best.

After a difficult birth in August, Graham and her husband, Jeremy, moved from Oklahoma to Conway, where the couple had few community ties. She's a student at the University of Central Arkansas, and he works at a pawnshop.

A few weeks after her daughter, Egypt, was born, Graham's breast milk ran dry. She felt "beyond helpless" and sank into a depression.

"You can't even do the one thing that your breasts are made to do," she said.

Still, with a fierce desire to breast-feed her baby, Graham sought advice.

She tried lactation stimulating bars, brownies and teas. She joined an online support group but left because she couldn't handle all the posts from moms who were doing well.

Meanwhile, every brand of formula made Egypt sick. In December, the couple ended up in the emergency room after spotting blood in Egypt's diaper. The iron content of the formula strained her insides.

"I was the point of, like, OK. I cannot keep doing this to my baby," Graham said.

After weeks of searching, Graham found a resource thousands of other Arkansas women have used. Not a hospital, not a clinic, but Facebook pages.

Mothers like Graham can't, or won't, breast-feed their children for lots of reasons: illness, societal pressures, time constraints and workplace demands.

Those mothers, and fathers, also know a diet of breast milk reduces a legion of health risks in their newborns.

However, Arkansas hospitals don't give breast milk to outpatients. Buying it from a "milk bank" -- a certified place that distributes breast milk -- can be pricey and isn't always an option. And online selling comes with its own set of risks.

Without a clear path forward, women forged their own solution.

On social media, Arkansas mothers who need breast milk connect with women who overproduce it. Donations are prompted by compassion, not cash. People drive hours to swap bags for hugs and thank-yous.

What's evolved is an imperfect answer to one of the most important questions a parent asks herself: How can I feed my baby?

MILK AS MEDICATION

Ear infections. Diarrhea. Diabetes. Leukemia.

Breast milk can decrease a child's risk for all the above, according to prevailing scientific research and the World Health Organization.

There's a tracked reduction in obesity. A baby's chance of contracting necrotizing enterocolitis, one of the deadliest infant diseases, drops off. The same goes for sudden infant death syndrome, known as SIDS, according to a 2017 study.

Not only does breast milk reduce health risks and lower medical bills, explained Dr. Misty Virmani, a neonatologist at the University of Arkansas for Medical Sciences, but "there's nothing else you can do to reduce those risks aside from breast-feeding."

Breast milk is packed with proteins, fats, vitamins and carbohydrates. The nutritional balance evolves as the baby grows.

For those reasons, and because breast-feeding helps mothers, too, health organizations such as the American Academy of Pediatrics recommend exclusive breast-feeding for the first six months of a child's life, with some breast-feeding at least until the child is a year old.

In different contexts, breast-feeding can refer to either feeding a child directly from the breast or feeding a child breast milk from a bottle.

To help mothers meet the recommended timeline, hospitals employ specialists to coach them on the challenges and benefits of breast-feeding. And for certain cases, there's donor milk.

"Donor milk" is given to a certified human milk bank. It's screened and gently pasteurized before being distributed to hospitals.

Donor milk at UAMS -- and at Arkansas hospitals that provide it, like Arkansas Children's Hospital and Baptist Health Medical Center in Little Rock -- is mostly used for premature babies in the neonatal intensive-care units.

Many of those babies were born before their mothers' milk could fully develop. Donations bridge that gap.

It's treated "as a medication," said Dr. Elizabeth Kim, who specializes in neonatology at the academic hospital.

"Unfortunately," Virmani said, "donor milk is not something you can get easily out of a hospital setting."

LOOKING FOR 'LIQUID GOLD'

That's a fact Graham knew well.

For advice, she contacted relatives. She Googled obsessively. And she called hospital after hospital, asking about breast milk for outpatients.

"I really felt like the hospital was going to be my golden ticket," Graham said. "But at the same time, I kind of knew it wasn't."

Eventually, a hospital's front desk employee told her to go on Facebook, she said. Graham found an Arkansas chapter for the group Human Milk 4 Human Babies. A similar organization also exists on Facebook, called Eats On Feets.

Online, among thousands of members, a shared language flourishes. "Milk heroes" are moms who donate. "Lo" is little one. And breast milk is "liquid gold," an element coveted above all else.

Like Graham, many of the women who ask for donations explain they've tried everything: lactation consultants, midwives, creams, stimulants, prayer.

"I feel like such a failure," one woman wrote. "I know I shouldn't but it's so frustrating to not be able to just pop a boob in her mouth."

In her own plea, Graham explained Egypt's formula allergy and her bloody stool. If anyone could donate, she would be beyond grateful, she wrote.

She punctuated the post with seven exclamation points.

RISKS OF MILK SHARING

Sharing breast milk is nothing new.

Wet nursing, when a woman breast-feeds another woman's child, is noted in the Bible. An inability to lactate is mentioned in the earliest known medical encyclopedia, The Papyrus Ebers.

(The cure, according to a passage of the text quoted in the scholarly paper, "A History of Infant Feeding," is to "warm the bones of a swordfish in oil and rub her back with it.")

But the Internet raises the risks involved in person-to-person breast milk sharing, some medical professionals say. The American Association of Pediatrics warned against it in 2016.

Vetted breast milk is available through 25 certified human milk banks in the United States, according to the Human Milk Banking Association of America. More are being established. None is in Arkansas.

Though milk banks help thousands of parents, some people find the costs to be prohibitive or learn they don't meet the medical qualifications.

The closest milk bank to central Arkansas is Mother's Milk Bank of North Texas in Fort Worth. The organization works with multiple Arkansas hospitals to serve premature and medically fragile babies.

Private citizens can apply to receive the donated breast milk if they have a prescription and a letter of "medical necessity."

A medical necessity is a baby waiting for a heart transplant, said Amy Vickers, the milk bank's executive director. A baby who only reacts poorly to formula would not qualify.

"Of course, that feels like a medical need when you're sleep deprived with a newborn," Vickers said.

Based on availability, the milk bank also offers a $10, 3.3-ounce bottle for mothers who are struggling to feed their healthy babies. The amount can generally last for two days, if the parent is supplementing the baby's diet with formula or other food, Vickers said.

"We want to give the milk away to everybody," she said. "There's just a lot of expense related to a tissue processing organization."

Donated milk is thawed, strained and sampled for nutritional content. It's heated, slowly, so unwanted bacteria die off, and tested for diseases that are transmittable through breast milk, such as HIV.

Intense scientific scrutiny distinguishes human-milk banks from person-to-person swapping.

"Really, we do caution against 'peer-to-peer' sharing because our moms are screened," Vickers said.

Virmani, from UAMS, pointed to examples of breast milk sold online to which water, cow milk or goat milk was added.

"All of those things could be quite harmful to babies," she said.

Selling breast milk is not explicitly illegal in any state, and it does not fall under a federal ban on the sale of human organs. A few states including Texas have laws that regulate human-milk banks but do not specifically refer to more informal avenues of milk sharing.

The potential risks of getting milk from a stranger did cross Graham's mind, even though the Facebook platforms ban the selling of breast milk and donors frequently disclose any health problems.

"You literally have to put all of your faith into God to make sure everybody is exactly who they say they are," Graham said.

Jerrika Longueville, who has hypoplasia and can't produce enough breast milk to feed her son, said the donors she's used have been open and honest.

"As long as they're donating and took the time to pump, and stash and meet me, I just personally believe that there's a very, very slim chance that there's anything wrong with the milk."

BARRIERS TO BREAST-FEEDING

By every measurable breast-feeding metric, Arkansas is near the bottom of states.

But "scientifically speaking, very few women -- I mean it's a tiny percentage -- physically cannot breast-feed for some reason," Vickers said.

So why don't more women breast-feed, or breast-feed longer?

The biggest problem, especially in Arkansas, is that there's not enough education on breast-feeding, Virmani said, rather than a lack of breast milk.

Women often don't have a realistic view of how breast-feeding works, or the time commitment it requires, she said. It's constant and exhausting. Feedings can be as often as every 20 to 30 minutes, said UAMS' Kim.

Workplaces often don't provide adequate space for women to pump breast milk. There is no guaranteed paid maternity leave under federal law, though Arkansas did pass a law providing four weeks of paid leave for state agency employees.

New mothers often are compelled by financial concerns to return to work quicker than they'd like, or before the recommended time off, the UAMS doctors said.

Initial pain or concerns about producing enough milk are other major hindrances, said Jessica Donahue, a lactation consultant and registered nurse with Baptist Health.

In Western culture, people accept that a woman's body can grow a baby, said Fiona Robertson, a lactation consultant at UAMS.

Yet, "we question that same body for producing milk," she said. It's often family members who dispense that judgment, Robertson added.

That judgment was felt by Alissa Rikki Phothisene of London in Pope County.

Her in-laws were completely against the Facebook groups when they learned she'd received donations, she said.

"I guess I had some depression, and stuff, because people wouldn't leave me alone about doing formula," she said.

Phothisene has nothing against formula. Her other children weren't breast-fed exclusively. But her newest child has gained weight by drinking breast milk in a way she didn't with formula.

"If I absolutely have to, I will post on that site again," Phothisene said. "I don't care what anybody says."

Doctors do recommend against breast-feeding if a mother carries certain viruses or is taking certain prescription drugs, marijuana or opiates.

For Meg Staires, breast-feeding was never an option. She and her partner adopted their newborn in June. Before he arrived, they brainstormed how they would feed their child.

"There are a lot of options," Staires said. "All of them are good, and all of them are hard."

They settled on the Facebook pages, which blossomed into a community for Staires.

"There isn't always access to a safe, nonjudgmental, free platform to ask questions about your baby or your health."

FINDING HER OWN FIX

In Graham's case, weeks passed before she got a response from a woman with excess breast milk who lived nearby.

Her husband picked up the bags, and Graham wept.

The relief was brief. They learned the donor had drank cow's milk, and Egypt is allergic.

Since then, Graham hasn't been able to find another donor. After trying six types of formula, she and Jeremy found one that accommodated Egypt's touchy digestive system, but it costs $28 for a small can. Insurance declined to pay for it.

Still, Graham, who is now pregnant with her second child, has not relinquished her dream of feeding her daughter breast milk.

Through chance, another option emerged.

Graham's mother lives in Oklahoma. She eats food that's lines up with Egypt's dietary needs. And she gave birth to a girl on March 7.

For the foreseeable future, Graham said she will drive five hours to her mother's home on weekends so Egypt, who has grown into a warm and bubbly 7-month-old, can have her grandmother's breast milk.

Graham will do this for her daughter, she says, because every little bit helps.

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SOURCE: The Centers for Disease Control and Prevention's 2016 Breastfeeding Report Card for the U.S.

A map showing the Breast-feeding rates in Arkansas and most neighboring states

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Special to the Democrat-Gazette

Jerrika Longueville of Fayetteville, who has hypoplasia and can’t produce enough breast milk, has fed her son, Milo, now 6 months old, with breast milk from donors. She says the donors have been open and honest and that she believes “there’s a very, very slim chance that there’s anything wrong with the milk.”

SundayMonday on 04/08/2018

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