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Missouri and Kansas advocates want more hospitals to offer human donor milk to newborns

Gary Logan
Mother's Milk Bank of North Texas
Human donor milk has nutrients, enzymes and other immunological properties that make it the preferred standard of care over options like formula, particularly for at-risk infants, advocates say.

A recent survey shows donor milk was unavailable for infants with a very low birth weight at 13% of hospitals with neonatal intensive care units, despite strong supply.

Each day as a lactation consultant, Michelle Finn sees first-hand the benefits of human milk for infant health.

Over the past decade or so, Finn, the lactation team lead at the University of Kansas Health System, says more and more evidence has emerged supporting human milk as the standard of care, especially for the most vulnerable babies, including those with very low birth weight.

In some cases, however, the mother’s milk is insufficient or unavailable, making pasteurized human donor milk the best option for those in a neonatal intensive care unit, or NICU.

“The unique composition of human milk just cannot be matched by any kind of infant formula product in terms of the nutrients, enzymes, growth factors, hormones, immunologic and anti-inflammatory properties,” Finn says.

Pasteurized human milk is associated with a nearly 20% reduction in the chances of developing sepsis for very low birth weight infants. Among preterm infants who received some of their mother’s milk but required donor milk as well, there was a 22% lower incidence of chronic lung disease.

“We’ve learned more and more about how important this is to ensure that, especially with our most vulnerable babies, human milk is really the standard of care,” Finn says.

But recent survey results from the U.S. Centers for Disease Control and Prevention show donor milk was unavailable for infants with a very low birth weight at 13% of hospitals with a NICU, despite growing awareness of the benefits and a strong supply.

“I think there was previously a limitation on milk supply on the milk bank side, but things have really changed,” says Lisa Stellwagen, a San Diego pediatrician. “There are now 31 milk banks in all of North America last year (which) dispensed over 9 million ounces of milk. There’s a lot of milk out there.”

So why are there still gaps in the use of human donor milk? Finn and Stellwagen say barriers to access — like awareness and cost — stand in the way.

“In some hospitals, the way milk is procured and the contracting process can be a problem — a lack of standardized feeding policies that make it really clear who has access to donor milk,” Stellwagen says. “Probably one of the biggest problems is just the lack of knowledge about the benefits of the safety of donor milk, both on the hospital staff side and on the patient side.”

The process of milk donation

Unlike being an active blood donor or listing yourself as an organ donor on your driver’s license, giving human milk is less commonly talked about, in part because it is only an option for one portion of the population during a limited window of time.

“I think there are a lot of myths there like that sounds so strange or that sounds gross,” Finn says. “I think there are obviously concerns to make sure that the milk is handled safely and that potential donors are screened.”

Becky Mannel, executive director of the Oklahoma Mother’s Milk Bank, says its top priorities are maintaining adequate standards for donor screening and ensuring any milk obtained is safe for consumption. The Oklahoma milk bank serves much of Kansas and Missouri after the closure earlier this year of the milk bank at Saint Luke’s Hospital in Kansas City.

Mannel says the typical milk donor is a breastfeeding mother with excess milk who undergoes a rigorous screening process, including interviews, a written questionnaire and a blood test. Once approved, the extra milk is pooled together from at least three mothers to ensure no milk comes from just one mother.

The milk then goes through a pasteurization process to minimize the destruction of its immune properties while ensuring no pathogens, bacteria or viruses remain.

“The milk is then dispensed frozen, and once we have bacterial cultures that have come back from an independent third party lab, that milk is dispensed to hospitals and babies in the community as well,” Mannel says.

Nationally, demand for pasteurized human milk continues to rise, says Lindsay Groff of the Human Milk Banking Association of North America. She cites a 20% increase from 2020 to 2021 and expects similar growth this year.

“You might have thought that with the pandemic and a lot of the stressors on the hospitals, we might have actually seen a decrease and, in fact, we’ve seen the opposite,” Groff says.

Strain on regional supply chains

Brenda Bandy, executive director of the Kansas Breastfeeding Coalition, says part of the growing demand is due to the baby formula shortage. But while some hospitals in Kansas have been using human donor milk in their care of infants for quite some time, she says they are largely in the minority.

In part, that's due to supply chain problems, Bandy says. The closure of the Saint Luke’s milk bank earlier this year added a significant burden to the system.

“Zero. We have zero milk banks in Kansas and zero in Missouri since Saint Luke’s closed,” Bandy says.

While the Oklahoma Mother’s Milk Bank has worked to pick up the slack, Bandy says the organization is hoping for more donors to keep up with the rising demand. One problem is the limited number of locations where donors can make drop-offs.

That is where milk depots come in.

“Milk depots are collection sites where donors can go to drop off their milk, and then these collection sites ship the milk to the milk banks,” Bandy says. “This helps expedite the process, and it also makes it easier for parents to take their milk to a location near them, rather than paying for the shipping or the milk banks paying for the shipping.”

Right now, there is only one milk depot in Kansas, located in Manhattan. Bandy says there are none in the Kansas City area, although the University of Kansas Health System is working on setting up milk depots.

In Missouri, Debbi Heffern, of the Missouri Breastfeeding Coalition, says Oklahoma's and Indiana’s milk banks are meeting current needs at Missouri hospitals. The eastern part of the state is well covered, with about 10 milk depots and a few others scattered throughout the state.

But she says the needs in the western part of the state are significant.

“If you think about it, someone who’s going to be donating milk most likely has a baby of her own, so it has to be easy for her to get her milk to wherever she’s dropping it off,” Heffern says. “There aren’t a whole lot of places in the western part of the state to do that easily.”

Standard of care

To ensure human donor milk is the standard choice for vulnerable babies, Bandy and Heffern say it's important to increase awareness of available tools and resources in the community.

For example, KanCare, the program through which Kansas administers Medicaid, covers human donor milk for infants in the NICU. Bandy says she recently received a call from a physician in the western part of the state who had never had a patient request donor human milk until now.

“They didn’t even know where to start,” Bandy says. “They may not be aware of the fact that they can write a prescription, and KanCare would cover that. There is a growing need to raise awareness for physicians and healthcare providers to understand that this is something that they can utilize.”

Heffern notes the Oklahoma Mother’s Milk Bank makes it easier for donors without a nearby milk depot.

“I know Oklahoma does happily send you the shipping materials so that you can pack your milk up at home and just send it right back to them,” Heffern says. “I think the whole matter is a matter of convenience, making it easy for moms to get their milk to the milk banks.”

For those hoping to improve the supply chain, Heffern says that milk depots do not have to be medical facilities. One in St. Louis is a hair salon.

Shortly after the Saint Luke’s milk bank closed, Lauren Hughes, a physician and owner of Bloom Pediatrics & Lactation, started a community milk sharing program after hearing from a patient who was paying overnight shipping to receive milk from Iowa. Hughes says such community programs are not just for those whose children are ill and they offer a more informal, cost-effective approach.

“For milk banks, the milk is pooled and pasteurized and tested itself, which is a very cumbersome and labor-intensive process, and on the recipient side that extensive labor leads to a significant price cost,” she says. “It’s also prohibitive for several people who want to donate if they take a medication like an antidepressant or something.”

According to Bloom's website, it's a 75-cent charge per ounce, payable before or at the time of pickup — a sharp contrast with the $3 to $5 cost at milk banks.

Hughes says she saw many peer-to-peer social media groups where mothers exchanged breastmilk without knowing their medical histories. She hopes her consultancy can be a middle ground where they still screen donors but with more leeway to connect patients and providers.

So far, Hughes says the community is eager to donate. Soon she might have to buy another freezer to store milk.

“I had a mom yesterday that had to abruptly stop breastfeeding because of the medication she was getting,” Hughes says. “Her infant was refusing any formula and she didn't know what to do. Within half an hour she had like 500 ounces ready. Things like that have been a very big need and relief in the community.”

As KCUR's health reporter, I cover the Kansas City metro in a way that reflects our expanding understanding of what health means and the ways it touches different communities and different areas in distinct ways. I will provide a platform to amplify ideas and issues often underrepresented in the media and marginalized people and communities in an authentic and honest way that goes beyond the surface of the issues. I will endeavor to find and include in my work local experts and organizations that have their ears to the ground and a beat on the health needs of the community. Reach me at noahtaborda@kcur.org.
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