Breast Milk Donation is Growing Across U.S. But It's Not All Safe, Doctors Warn
For a variety of reasons, breastfeeding is just not possible for everyone. Formula was a lifesaving development when it was first created. Before formula, a lot of babies who did not have access to adequate breast milk starved to death.
Sometimes wet nurses provided babies with nourishment, if their mothers could not, or did not want, to breastfeed. These were usually women who earned an income by breastfeeding other women’s babies. In some cultures around the world, even today, milk sharing is a socially accepted practice among sisters and close friends who support each other by feeding a baby if the mother cannot produce enough milk.
In America, milk sharing is not a widely accepted practice. But increasing awareness of breastmilk’s advantages over formula is leading some to turn to milk sharing.
In 2017 the American Academy of Pediatrics issued a recommendation that at-risk, premature babies be fed donated, pasteurized breastmilk, if their mothers are not able to breastfeed. This milk comes from milk banks that are certified by the Human Milk Banking Association of North America, where donors are tested for contagious diseases.
But another, informal system of milk sharing could be putting some babies at risk.
Kathryn Ellis had fostered several children, but bringing a 10-day-old baby home from the hospital was an entirely different experience.
“He was a safe haven baby, so he had been left at a hospital. He was tiny,” Ellis said.
At birth, baby Cooper weighed just six pounds. He had a pretty serious health condition, called hypoplastic heart syndrome, where the right side of his heart was not fully developed. Consequently, he needed multiple surgeries after he was born.
“The doctors even said to us before we took him home, "You don’t have to take him home. You can wait for a perfect baby." And that wasn’t at all what i was thinking," Ellis said. "I was thinking, "Of course I’m gonna take him and I’m gonna take care of him."”
So when he was 10 days old, Ellis took Cooper home, and started the process to adopt him. Like any baby, he needed around the clock feedings.
“I loved sitting just with him, and we’d sit up on the loft," she said. "And the stove would be hot and in a fire and the heat would go up to that loft, and it would be quiet and dark. And I would look out the window and see snow and feel warm with him. I felt like that time was so special, to be just the two of us.”
Since Ellis was not his biological mother, she fed him formula. The doctors told her that, because of his condition, Cooper was vulnerable to viruses and infections.
Ellis had heard about scientific studies that show breast milk has immune boosting properties, and babies who drink breast milk have a better defense against viral infections, like the flu and common cold, so she wanted to feed him breastmilk. Most of these studies were done in the 1990s, and they led the American Academy of Pediatrics to recommend all babies be breastfed.
But since Ellis did not have her own breast milk, she decided to feed him donated milk. The milk usually arrived in a cooler packed with ice. The women who supplied the milk did not know each other, but they did have one person in common - a local midwife, named Angie Nixon, who had helped them deliver their babies. She reached out to each of them to ask if they would donate their extra milk. Nixon usually made the deliveries.
“All babies should have breastmilk,” Nixon said. “So when we heard about this baby in need, that was my first thought, "Wouldn’t it be great if we could get that baby some breastmilk?"”
Safety Concerns With Milk Sharing
In this case, Nixon had seen the women’s medical histories, and no infectious diseases were passed onto baby Cooper. But, this type of milk sharing is risky.
The American Academy of Pediatrics warns that feeding babies donated milk in this way is not safe. They recommend milk banks require blood tests from all donors and that they pasteurize human milk. There are health risks, like bacterial contamination, and life-threatening diseases, like HIV or Hepatitis C, which can be transferred through milk. Pasteurization kills these viruses and bacterial contamination.
A study published in the Journal of the American Academy of Pediatrics found that most human milk purchased over the internet was contaminated with some type of bacteria. The milk purchases over the internet had higher concentrations of contaminated milk than what is found in milk banks. Although some bacteria is safe, even beneficial, at least some of it is considered dangerous for infants.
The study, led by Dr. Sarah Keim, concluded that most of the bacteria found in the milk samples was likely caused by poor pumping, storage or shipping practices.
Kathryn Ellis said she knew there might be some risks with using donated milk, but she trusted that it would be alright. Also, the experience made her feel she had the support from her community, even from women she did not know.
“And for me to be giving him nourishment, which I knew was my job, but to know that there were other moms that had contributed to that," she said. "I did feel a support of people that didn’t even know us.”
Feeling a part of a supportive community is something expressed by several other women contacted for this story, who donated or used donated milk through Facebook or other social media groups online. Several women said they feel like sharing milk connects them to their Appalachian culture — a culture that believes in the value of leaning on your neighbor or family for help.
But this culture of sharing does not protect against contagious diseases, especially in a region where HIV and Hepatitis C is now on the rise.
“We have no idea what’s in the milk,” said Dr. Stefan Maxwell, the medical director of the Newborn Intensive Care Unit, at CAMC Women’s and Children’s Hospital in Charleston, West Virginia. He warns against feeding babies donated milk from the internet.
“The nutrient value is probably high. But women are exposed to different viruses and bacteria," he said. "And in this day and age where there’s a high prevalence of Hepatitis C or HIV, and some of these other transmissible viruses, it’s probably not a good idea to use somebody else’s breast milk, unless they’ve been tested.”
Why NICUs Use Donated Breastmilk
Dr. Maxwell does support the use of donated milk when it is tested and pasteurized. He encouraged his hospital to be among the first in the country to feed donated milk to the most at-risk, premature babies.
The milk they use comes from a milk bank that is certified safe by the Human Milk Banking Association of North America (HMBANA).
Dr. Naomi Bar-Yam is the former president of HMBANA. She also directs a milk bank in Newton Upper Falls, Massachusetts. She said HMBANA requires that all donors are screened, to ensure the breastmilk is safe and free of diseases.
“And we test moms for HIV, Hepatitis B and C, and Syphilis,” Bar-Yam said.
She said last year, they had to turn down more than 20 percent of the women who applied to donate because they did not pass the screening.
Still, thousands of women do successfully donate to HMBANA milk banks, and the numbers are increasing. Most are moms who have surplus breastmilk. Some are moms whose babies died.
“And they are saving lives, in helping others, and they talk about it in terms of this is something my baby and I can do to help others,” Bar-Yam said.
She said research shows that when NICUs begin using donated milk, more moms actually make the choice to start breastfeeding their own babies.
That is what happened at Dr. Maxwell’s hospital, when they began using donated breastmilk three years ago.
“Well initially I thought we would have a negative response from the parents,” Maxwell said. “And in fact, we’ve had the unintended consequence where mothers who had not intended to breastfeed before, now decided that they wanted to use their own breastmilk.”
And Maxwell sees this as the ultimate goal, that more women, who are healthy, are encouraged to give breastfeeding a try. Because even though donated milk is better than formula, what gives babies the best chance of surviving, and thriving, is almost always their own mother’s milk.
Want to learn how you can donate breastmilk? Most milk banks accept milk through the mail, and will usually pay for shipping. The HMBANA website has a list of milk banks that follow safety guidelines through their organization. Here are some that are in, or close to, Appalachia:
Ohio Health Mothers' Milk Bank
4850 E. Main St., Suite 140
Columbus, Ohio, 43213
Mid-Atlantic Mother's Milk Bank
WakeMed Mother's Milk Bank and Lactation Center
Mothers' Milk Bank of Tennessee
This story is part of an Inside Appalachia Episode about breastfeeding and motherhood.