Moms turn to the internet to find donated breast milk

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COLUMBIA — You can find just about anything on the Internet, including breast milk. Many moms who want to give their babies the benefits of breast milk but struggle to make enough milk themselves for various reasons have turned to the web to find a way to bridge that gap.

"I think most of us moms just want to help each other any way that we can. Whether that's supporting or just giving a kind word, and if we have something extra that we can give, then we're willing to give it. For me that happened to be breast milk," said Jess Soete.

She had thousands of ounces of unused milk and made about $1,000 giving it to a Prolacta Bioscience milk bank, but she also gave more than 1,000 ounces to moms in Missouri free of charge including many who she'd never met except through mom groups on the Internet.

Many healthcare providers do not recommend informal milk sharing of any kind. Instead, experts say milk banks that meet FDA regulations, like those run by the Human Milk Banking Association of North America or Prolacta Bioscience, provide the safest option.

"They go by guidelines that are set up by the blood banking system, and so they follow those same guidelines because it is a bodily fluid, and diseases and bacteria and viruses can be passed through that milk," said Korrin Ingalls, a lactation consultant and nurse in the NICU at University of Missouri Women's and Children's Hospital.

She added nurses at the hospital strongly encourage breastfeeding as the best option for a baby. Their second choice is donor milk from a milk bank. Currently, the Women's and Children's hospital is setting up a breast milk scanning system to safely track donor milk. The NICU plans to make milk bank donor milk available to some patients by the end of the year. According to Ingalls, the hospital will not buy milk online or accept donations from "informal" donors (donors who have not gone through the milk bank screening process).

A Stanford University study in 2009 showed about three percent of a potential donor pool tested positive for serious diseases including HIV and Syphilis. Another medical study showed about 74-percent of online samples didn't meet the bacteria standards of milk banks, and another found breast milk mixed with cow's milk in online samples.

Milk banks provide testing and a pasteurization process individuals can't provide. There's only one milk bank in the state of Missouri. It's located in Kansas City, but the limited supply is reserved for hospitals, not individual buyers. Even if they wanted to pay for the milk bank's extra safety precautions, it's not an option for most parents. Which is why despite FDA warnings against feeding your baby breast milk acquired through individuals or the Internet, many parents have chosen to go online.

Human Milk for Human Babies- Missouri is a Facebook page thousands of moms have joined. It connects individual women looking to donate or receive breast milk without a price tag. It does not promote the sale of milk. There are also multiple online groups that facilitate the buying and selling of breast milk. It typically sells for a price of one to two dollars an ounce, but it can go for several dollars more. These sites have varying degrees of regulation, but most operate under a use at your own risk model.

Soete says she found lots of moms willing to take a certain amount of risk to feed their babies what is sometimes called "liquid gold."

"I would reach out and say yeah, I can meet you at Hyvee, give you a bag," Soete said. "So the gamble you take as a mom in that way is you know that breast milk is good for your kid, but at the same time they don't really know me."

Soete said she felt comfortable with the arrangement, especially because she went through the screening process to give to the milk bank, including extensive questionnaires, a blood draw and freezer storage testing.

"They go through an extensive questionnaire to look at what are your eating habits. Do you take any other medications? Have you been exposed to any diseases? Has your significant other been exposed to any diseases? What is your process when you pump? What do you do first? Do you wash your hands? Do you freeze it immediately or does it sit out for four hours, because the longer breast milk sits out the more likely it is to have some bacteria," Ingalls said of the milk bank screening process. 

Moms who have been on the receiving end of informal milk sharing describe it as a priceless gift. Maureen Harris adopted her son Max through the foster system as a newborn, and his biological mother had a drug addiction.

"We wanted to pour in every possible thing that could help him. Where there were deficits, we wanted to try to fill that up," Harris said, remembering the first months with Max. One way she tried to help him is by providing donated breast milk after a friend from church offered to pump the extra breast milk Harris wouldn't be able to provide on her own.

"Every week she would come with a cooler, and she would give me all this milk for the week. That lasted about a year," Harris said. "It is weird. It is this really weird thing that somebody else's milk is going into your child who somebody else birthed. Like the whole thing is comical, but I think it's really beautiful at the same time."

Harris considers the donation a priceless gift. One she wishes she would have had for her younger son who she adopted later from the same biological mother with the same drug issues. At the time she adopted her second son, she didn't have a friend she trusted to donate milk. She didn't feel comfortable finding a stranger online to donate, so she used formula instead. Now, a few years later, she says she's noticed small differences. She doesn't think her son who ate formula had as strong of an immune system as his older brother's. She wishes there would have been a convenient option to find professionally screened donor milk.

"We moms cannot do things alone. No matter if you're a foster mom, adoptive mom, birth mom, single mom, married mom, we need other moms to lean on. We can't do it alone," said Harris.

Everyone we talked to said they thought people would use a milk bank if it was open to the public, but Ingalls thinks a local option open to the public that meets FDA standards is probably unrealistic at this point. She said there aren't enough donations to meet that kind of public demand, and there is a high cost associated with screening and storing milk.