Health

The online world of breast milk sharing

Some describe network as support, others as a huge risk for young Iowans

Meagan Rockwell feeds a bottle of donated breast milk mixed with formula for her 18-month-old daughter Tobin Hansen at their home in Cedar Rapids on Tuesday, March 12, 2019. Tobin was born with Caravan disease, a rare genetic nerve disorder that causes difficulty for her to swallow and eat solid food. (Cliff Jette /The Gazette)
Meagan Rockwell feeds a bottle of donated breast milk mixed with formula for her 18-month-old daughter Tobin Hansen at their home in Cedar Rapids on Tuesday, March 12, 2019. Tobin was born with Caravan disease, a rare genetic nerve disorder that causes difficulty for her to swallow and eat solid food. (Cliff Jette /The Gazette)
/

Meagan Rockwell was desperate to get her daughter fed.

Tobin Hansen, her then-14-month-old, was admitted to the University of Iowa Hospital and Clinics shortly after Thanksgiving for a stomach virus. Rockwell needed for her to drink a bottle for her dehydration, but Tobin was refusing formula.

So the 28-year-old Cedar Rapids mother put out a plea on Facebook. Please, she asked, does anyone have extra breast milk her daughter could have?

Right away, an acquaintance responded that she had extra in her freezer.

“Tobin sucked down a whole eight-ounce bottle like it was no problem,” Rockwell recalled. “From then on out, we’ve been on donor milk for her.”

When it comes to parenting, “breast is best” becomes the mantra drilled into mothers’ heads early on — but for those without an adequate supply of their own, donated breast milk has become an increasingly common option.

Agencies operating as milk banks offer lab-certified donations for children in the hospital and in some outpatient settings. But many mothers say those services simply are not an option for them due to high costs — $15 a bottle through the Mother’s Milk Bank of Iowa.

In response, an effort to connect women whose babies need supplemental breast milk to nearby women who have an extra supply to give away has risen up on social media, described by some as an underground network of mothers helping mothers

“It’s just a huge blessing for people who want to give their babies mother’s milk and can’t,” said Rebekah Dove, 37-year-old Cedar Rapids mother who relies on donated breast milk for her children.

ARTICLE CONTINUES BELOW ADVERTISEMENT

But officials at milk banks often warn the public these social pages pose very real risks to the well-being of Iowa’s youngest.

“Those babies, they depend on us. So in good conscience, I couldn’t recommend that,” said Jean Drulis, co-founder and director of Mother’s Milk Bank of Iowa.

A SAFETY NET

Tobin was diagnosed with Canavan disease, a progressive, fatal neurological disease that is caused by a genetic abnormality, shortly after her birth. Rockwell said her daughter is losing her ability to eat, swallow and breathe on her own, meaning nursing always was a struggle and her supply eventually was depleted.

Tobin will need a feeding tube in the next couple months, but Rockwell said breast milk has been keeping her as healthy as possible for as long as possible.

“Not only does she absolutely love it, it keeps her hydrated. That’s key,” she said.

The benefits of breastfeeding are clear, according to recent research, and the majority of women in the United States start out exclusively breastfeeding their babies, according to a survey of children born in 2015.

However, by the time the child reached its first three months, about 47 percent were exclusively breastfed nationwide, according to the federal Centers for Disease Control and Prevention. About 25 percent were breastfed through six months.

Less than 52 percent of Iowa mothers exclusively breastfed through three months and about 30 percent through six months, the CDC said.

ARTICLE CONTINUES BELOW ADVERTISEMENT

“These rates suggest that mothers may not be getting the support they need from health care providers, family members and employers to meet their breastfeeding goals,” according to the CDC.

In recent years, Facebook pages such as Eats On Feets and Human Milk 4 Human Babies have increased in popularity among parents seeking to meet these goals.

“It gives parents a safety net that allows parents to feed their children,” said Brandi Kennedy-Evans, a Council Bluffs resident who has monitored the Iowa and Nebraska Eats On Feets pages for nearly eight years.

Kennedy-Evans, who worked as a doula for several years, said she wanted to bridge the gap between moms struggling to produce enough breast milk and women looking to donate their unused supply.

Dove, of Cedar Rapids, discovered the network after the birth of her second child, and is exclusively feeding her third child on donated breast milk. She struggled with breastfeeding with her first child, and describes groups such as Eats On Feets as “a tremendous blessing” for her family.

“This is huge to me,” Dove said. “It continues to be huge to me and my family.”

A CODE

It offers that safety net, but at what risk?

The sale of human breast milk on websites such as onlythebreast.com — where, in some cases, bags are selling for hundreds of dollars — is technically legal, but largely unregulated, according to one legal commentary on the website of the U.S. National Library of Medicine, part of the National Institutes of Health.

Academic studies highlight the risks involved in traversing these websites, including a 2013 study in the journal Pediatrics that compared human breast milk purchased online with milk donated via a milk bank. Of the two, the study found milk sold online had higher bacteria levels.

ARTICLE CONTINUES BELOW ADVERTISEMENT

Drulis said Iowa’s milk bank, as well as those in other states, pasteurize donated milk to eliminate harmful bacteria and viruses.

Kennedy-Evans said Eats On Feets guidelines prohibit any money from being exchanged in these scenarios, which is intended to diminish any dishonesty, such as diluting breast milk with cow’s milk.

Kennedy-Evans oversees the Eats On Feets pages every day, but no regulatory body exists to serve as a check on the milk passed between two individuals.

“I completely understand there’s a risk with it. Absolutely,” said Elizabeth Medlang, 31, of Prairieburg, who has donated breast milk for five years. “If it’s not safe for their own child, I wouldn’t think they would give it to someone else’s child.”

It’s up to the donors to self-report any risky behaviors or potential red flags to recipients of their donor milk, and recipients are encouraged to request blood screenings and ask personal questions about lifestyle and habits.

“I feel like there’s kind of code, maybe unwritten code, that this is for the kids,” Dove said. “I’m not doing this for another mom, I’m doing this for a baby.

“It’s like nursing — you don’t make a choice to nurse because it feels good to you, you make the choice because it’s good for your child.”

OVERSIGHT

Milk banks, common in other parts of the world, were created as a safe method to exchange donor breast milk.

Mother’s Milk Bank of Iowa is the only one in the state and one of 27 across the nation recognized by the Human Milk Banking Association of North America, the regulatory body of not-for-profit milk banks.

ARTICLE CONTINUES BELOW ADVERTISEMENT

In 2018, Mother’s Milk Bank of Iowa dispensed 224,000 of donated breast milk across 17 states. Some 85 percent of donations goes to 61 hospitals in those states, and the remaining 15 percent to outpatient settings.

Drulis said breastfeeding mothers are screened by the milk bank before they become donors and must submit for blood testing and have written approval from their health care providers.

That’s in addition to the rigorous testing done on the milk itself.

As to the comments from women who turn to peer-to-peer milk sharing because, they say, the milk bank is too costly, Drulis said, “Those are valid criticisms.”

The $15-a-bottle price through the Mother’s Milk Bank of Iowa goes to cover overhead and lab procedures. Drulis said. The milk bank makes no profit from breast milk donations.

Most insurance companies and Medicaid won’t cover a breast milk prescription, Drulis said.

This was the challenge for Dana Arenas, a 33-year-old Cedar Rapids woman who sought out milk banking for her then three-month-old son who refused formula.

Arenas said she fought with her private insurance company for two weeks to reimburse her for $400 of donated milk — or about two days’ worth — and was denied coverage.

So she went to Facebook and found support through peer-to-peer milk sharing.

“Every doctor and nurse kept telling me this was not OK ..., but how am I going to feed my baby without this?” Arenas asked.

Drulis said she believes milk banks could be more accessible if these insurance companies opted to cover donated breast milk for Iowa families.

ARTICLE CONTINUES BELOW ADVERTISEMENT

Drulis continues to advocate for families to come to a milk bank for breast milk, and hopes more people using peer-to-peer will bring their network under the safety of a regulatory body.

But mothers such as Dove are content where they are.

“There’s so much about raising children that people try to make controversial,” Dove said. “It’s not just what they eat. Every decision you make as a parent can be put under the microscope.”

• Comments: (319) 368-8536; michaela.ramm@thegazette.com

Give us feedback

We value your trust and work hard to provide fair, accurate coverage. If you have found an error or omission in our reporting, tell us here.

Or if you have a story idea we should look into? Tell us here.

Give us feedback

We value your trust and work hard to provide fair, accurate coverage. If you have found an error or omission in our reporting, tell us here.

Or if you have a story idea we should look into? Tell us here.