Booming Demand For Donated Breast Milk Raises Safety Issues

Nov 27, 2013
Originally published on December 2, 2013 9:04 am

The public health message that "breast is best" has been received loud and clear. More mothers in the U.S. are breast-feeding, and they're doing so longer than ever.

But those simple facts hide a complicated world where passions about breast milk run high, and demand has skyrocketed.

Women who have extra milk are intensively courted, by hospitals who need the breast milk for premature babies and by moms who can't nurse their own babies and don't want to use formula.

Courtney Helms, who works in fundraising for an educational nonprofit in Dallas, had no idea about the market for donated breast milk until her second son was born. Helms was a committed breast-feeder, but her supply dropped after recurrent bouts of strep throat. So she turned to a Facebook group to find moms who would give her extra frozen milk.

"Before I started to have kids I never would have thought of anything like this and maybe if I did, I would have thought it was weird," Helms said. "But being a wet nurse is not something we have just invented recently."

Helms wasn't all that concerned about safety, though she met with donors in person and asked a few questions about diet, medications and caffeine intake. But mostly she just trusted them, because they were nursing their own babies.

That's a mistake, according to people who work for breast milk banks. These banks, mostly nonprofits, carefully screen donors and also pasteurize the milk. Mothers are tested for infectious diseases like HIV and hepatitis, and the milk itself is tested for tested for bacteria, says Kim Updegrove, president of the Human Milk Banking Association of North America.

"The practice of Internet sharing of human milk is not safe," Updegrove says. "Sharing a body fluid with all of its potential bacteria and viruses is dangerous, and it is playing Russian roulette with your child's life."

A recent study in the journal Pediatrics now cast a light on the risks. The study compared breast milk purchased online from anonymous donors with milk donated to a milk bank by screened and trained donors. The milk sold on the Internet had higher bacteria levels, including contamination with fecal bacteria and salmonella.

Helms had heard about the study, but isn't convinced that what she did was dangerous. She believes that people who would sell milk, as opposed to giving it away, have different motivations and may take fewer precautions when collecting and storing the milk.

Nevertheless, every ounce of milk that is sold or shared online is one less going to hospitals.

Research has shown that premature babies fed breast milk, either their mother's own milk or donor milk, do better. Breast milk helps ward off necrotizing enterocolitis, a dangerous intestinal illness that can kill underweight newborns.

At Texas Children's Hospital in Houston, neonatologists encourage mothers of premature babies to pump. But if that doesn't work, they often feed the babies donor breast milk purchased from a regional milk bank that tests and pasteurizes it.

First-time mother Madison Fitzgerald, 20, praised the program. Her baby, Jake, was born at 26 weeks, and Fitzgerald's attempts to pump enough milk petered out after two weeks. The neonatologist prescribed donor milk every three hours. "I think it's a lot better for him than having to process formula," she says. "It's helped us a lot with getting him bigger and stronger and ready to go home."

After instituting this approach in 2009, rates of necrotizing enterocolitis at Texas Children's dropped. But as other pediatric hospitals followed suit, the milk got harder to find. To lock in a steady supply, Texas Children's created its own milk bank and volunteer network.

"We have a very high-risk population and a lot of babies that needed donor milk," said Kristina Tucker, manager for the milk bank."And we often weren't able to get enough." The hospital also purchases a fortified breast milk product from a for-profit company.

In this context, breast milk straddles categories. It is both food and medicine. Three states also consider breast milk to be a human tissue, and regulate it that way. But so far the Food and Drug Administration has chosen not to regulate informal sharing of breast milk. It's still legal to share it online, although the FDA recommends against it because of the safety risks.

Updegrove would like the government to simply outlaw the Internet milk trade. This would steer would-be donors to the milk banks that screen and test milk, increasing both safety and supply. She says there might even be enough supply generated to share the milk with healthy newborns.

In the meantime, even nursing proponents like Updegrove and Tucker maintain that when nursing fails emphasize that formula remains a good and safe choice for full-term, healthy babies. They say donor breast milk should be preserved for the babies who need it most: babies who are premature, allergic, or have digestive problems.

"Formula sometimes doesn't have to be the four-letter word," Tucker says. "Sometimes it's necessary and that's OK. And sometimes we need to let moms know that's OK, you're still doing the best you can do."

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It's ALL THINGS CONSIDERED from NPR News. I'm Audie Cornish.

For years, new mothers have been taught that breast milk contains the perfect blend of nutrients and antibodies for babies, and the messaging appears to be working: More mothers in the U.S. are breastfeeding and for longer. But the message has been received with such eagerness that some moms who can't breastfeed are going to great lengths to obtain breast milk for their babies.

Carrie Feibel, at member station KUHF in Houston, has this report on the ongoing battles over the safety and supply of shared breast milk.


CARRIE FEIBEL, BYLINE: Here in the intensive care unit at Texas Children's Hospital in Houston, breast milk is more than just food. It's life-saving medicine. Nurse Manager Courtney Prewitt describes a frequently fatal disease that strikes low birth weight babies.

COURTNEY PREWITT: These babies will sometimes have death in the intestine tract, meaning that your intestines and bowels will die.

FEIBEL: After the hospital started giving donor breast milk to these babies, rates of the disease dropped. Prewitt watched it happen.

PREWITT: It does amazing things, but it does amazing things at the right time and the right place from the right person.

FEIBEL: Nonprofit milk banks collect extra breast milk from donor moms. They test and pasteurize it, and distribute it to the sickest babies. There's even a for-profit company that uses breast milk to create a concentrated food product for premature infants. These milk products are regulated by the Food and Drug Administration. But hospitals like Texas Children's buy up almost the whole supply as fast as it can be pasteurized processed.

Kim Updegrove is president of the Human Milk Banking Association of North America.

KIM UPDEGROVE: Today, breast milk that's donated to a milk bank is a scarce resource. So there is a prioritized gate-keeping that takes a look at the diagnosis and medical conditions of that infant.

FEIBEL: But that leaves parents of otherwise healthy babies with very few options. Many turn to the Internet. Online, women swap, share and even sell their breast milk to whomever they want. It's completely legal and unregulated.

Courtney Helms, of Dallas, used the Internet to find extra milk for her second son.

COURTNEY HELMS: It's funny. Because before I started to have kids, I never would have thought of anything like this, and maybe if I did, I would have, you know, thought it was weird. Or, you know, maybe even ooky.


HELMS: But, you know, being a wet nurse is not something we have just invented recently.

FEIBEL: Helms was a committed breast feeder, but after Thomas was born she had recurring bouts of strep throat. Her own milk supply declined and she didn't want to use formula. So she found four local moms online and asked if she could have their extra frozen milk.

HELMS: I wanted him to get, you know, the immunity protections that breast milk offers, the nutrients. I mean I can't really go into the science of it. But it really was just kind of a gut feeling that that's what I wanted him to have.

FEIBEL: But stories like that make Updegrove, of the Milk Bank Association, very nervous. She says people who share untested milk don't realize it's the equivalent of sharing blood.

UPDEGROVE: Sharing a body fluid with all of its potential bacteria and viruses is dangerous. And it is playing Russian roulette with your child's life.

FEIBEL: Updegrove says a recent study in the journal Pediatrics now offers some proof of the risks. The study compared milk purchased online with milk donated to a milk bank by screened and trained donors. The Internet milk had higher bacteria levels, including contamination with more fecal bacteria and even salmonella.

Helms has heard all about the studies but says she trusted the moms she worked with and would even do it again.

HELMS: I asked them all basic questions about what their diets were, were they on any medications. You know, were they on anything specific like, you know, did they take a lot of caffeine, bacteria. I think I was reassured because they were giving the same milk to their children.

FEIBEL: Helms always picked up the milk in person. Sometimes she thanked the moms with a gift card to a local restaurant.

This online trading has been hard on milk banks who desperately need more donors to meet the demand from neonatal intensive care units. So far, the FDA has declined to regulate the informal sharing of milk, though it does recommend against it. Updegrove says simply outlawing the practice would help solve the safety issues and maybe even the supply problem.

UPDEGROVE: Imagine a scenario where every healthy, lactating mot her called a milk bank and was screened and donated even a hundred ounces of milk. The milk banks then would have so much milk that it would be available to those healthy infants. It would be an entirely different situation from what we have today.

FEIBEL: There is some shared ground in this battle over breast milk. Almost everyone agrees that new mothers need good breastfeeding support so they don't give up. Employers should encourage pumping at work. And there's another option.

Kristina Tucker is the manager of Lactation Services at Texas Children's.

KRISTINA TUCKER: Formula sometimes doesn't have to be the four-letter word. Sometimes it's necessary. And that's OK.

FEIBEL: For NPR News, I'm Carrie Feibel in Houston.

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