Sharing breast milk despite warnings

Lynn Heinisch says her infant son's life was saved by mothers' milk - other mothers' milk.

Heinisch wasn't producing enough breast milk for Liam, and formula made him horribly sick. At 4 months, he weighed a skeletal eight pounds.

So Heinisch, who lives in Croydon, turned to friends and the Internet, tapping a trend that proponents see as well-informed wet-nursing in a wired world - and public health officials call risky.

"At first, my pediatrician was concerned. I said, 'It's not like I'm going around sharing needles,'" said Heinisch, 31, whose firstborn is now a healthy, chubby-cheeked 10-month-old. "If it wasn't for 'informal milk sharing,' I don't know what would have happened to my son."

On Monday, U.S. Food and Drug Administration advisers met to gather information and seek public comment - for the first time - about formal human milk banking, begun in 1943 to serve newborns in hospitals.

Casual milk-sharing among mothers was not on the panel's agenda, but it's certainly on the FDA's radar. Last week, the agency posted a stern website warning "against feeding your baby breast milk acquired directly from individuals or through the Internet" because of the danger of infectious diseases and contaminants, including illegal drugs.

The FDA's northern counterpart, Health Canada, issued its own admonishment last month: "Breastfeeding promotes optimal infant growth, health and development, and is recognized internationally as the best method of feeding infants. However, unprocessed human milk should not be shared."The statements came just a few weeks after Emma Kwasnica, a mother of three in Montreal, launched a global network to facilitate local milk-sharing "in a safe and ethical manner" through regional chapter pages on Facebook. Called Eats on Feets (think Meals on Wheels but more personal), the network now has chapters in all 50 states and has arranged about 100 matches - including Heinisch's.

Public health agencies "are old-school," Kwasnica said. "They don't understand how we use social media. We forge friendships online, then meet."

The risks - and benefits - of milk-sharing depend on many things.

The chances of passing hepatitis B or C in milk are "negligible," but transmission rates range up to 42 percent for the AIDS virus, and 76 percent for cytomegalovirus (CMV), a common infection that is usually harmless but can in rare cases cause severe illness in infants, according to data collected by FDA staff for the panel.

However, most germs can be killed by "flash pasteurization" - heating milk at 144 degrees Fahrenheit (62 degrees Celsius) for 30 minutes.

"That will kill all viruses and almost all bacteria" without destroying the beneficial components of breast milk, said Thomas Hale, a clinical pharmacologist at the Texas Tech University School of Medicine.

Hale, who was not at the FDA meeting, runs the Infant Risk Center (http://infantrisk.org) to provide the latest research on the use of medications during pregnancy and breastfeeding.

Because drugs - both prescription and illegal - are generally not affected by pasteurization, formal milk banking organizations carefully screen their donors.

"Milk bank donors can't take any drugs or smoke or drink," Hale said.

Indeed, the nonprofit Human Milk Banking Association of North America - a presenter at Monday's meeting - requires a health statement from the donor's doctor and her infant's doctor. (Donors are not paid.)

The problem is that the association's 10 banks - none in Pennsylvania or New Jersey - focus on hospitalized newborns and have no way to meet the need of mothers who can't breastfeed because of physical problems or adoption.

A relatively new, California-based, for-profit company, Prolacta Bioscience, uses donated human milk to make a concentrated, fortified product that it sells to hospital intensive care units.

"We deal only with premature infants - tiny, fragile kids," said Prolacta chief executive officer Scott Elster.

Meanwhile, women like Heinisch can feel helpless and desperate.

"It's overwhelming how much need there is," said Heinisch. "I tried to get [banked] milk, but it was $5 an ounce, and I'd have to drive" hours from home.

Her anguish was compounded by a history of miscarriages.

"Now I was 'failing' to produce enough milk for him to even live," she recalled. "To say I was bawling my eyes out was an understatement."

It was in July, while doctors at Children's Hospital of Philadelphia were still puzzling over Liam's "failure to thrive," that Heinisch found help through online connections.

Molly D. May of Pittsburgh - who now spearheads the Pennsylvania Facebook page of Eats on Feets - was among five mothers who pumped extra milk, or tapped their frozen milk storage, to donate for Liam.

May believes women are capable of making informed choices to help one another.

"Women get tested while pregnant for all kinds of diseases. Any donor can provide medical records if asked. There are risks. But there are risks with formula, too," she said, noting that the FDA routinely announced recalls of tainted commercial formulas.

Nonetheless, even breastfeeding advocacy groups do not endorse sharing.

Lisa Broderick-Cohen of Moorestown, a lactation consultant and La Leche League leader, said she wishes every hospital had a milk bank, so every infant in need could safely benefit from mother's milk.

"But as far as people going online to get it, that's kind of like going on Craigslist," she said. "It's creepy and dangerous."

Actually, Craigslist recently blocked a Canadian woman who tried to sell her unneeded milk, according to a story last week in the Vancouver Sun.

As for the FDA, it plans to use the information gathered on Monday "in future deliberations."

Source: Philly.com Health News , By Marie McCullough "Inquirer Staff Writer"