Anaya Cassin is turning two in a few months. For someone with Infantile Krabbe Leukodystrophy this is huge. The average life expectancy of a baby with Krabbe is 13 months.
“She wasn’t supposed to live until two,” said Camara Cassin, Anaya’s mom, who lives in Nelson, B.C. “They’ve told us that she would probably die in her first year.”
Anaya relies on donated breast milk for survival. She can’t feed on the breast—due to loss of muscle coordination, she chokes on the milk. And because Anaya wasn’t feeding, Cassin started losing her milk supply.
Formula wasn’t an option. “She would just get horrendously sick,” Cassin explained. “Some friends of mine offered their breast milk and I kept pumping as much as I could. We got her back on a breast milk only diet, and it made a world of difference,” said Cassin. Anaya started gaining weight and has been on a breast milk diet ever since.
Looking for donated milk was difficult. There’s only one milk bank in Canada, the B.C. Women’s Milk Bank in Vancouver, and infants in the neonatal intensive care unit get priority over the limited milk supply. And while the milk is free to in-patients at the B.C. Women’s and Children’s hospitals, it’s an expensive option to other recipients at $5 per 120 ml plus the cost of shipping. The charge is not for the milk itself but for the cost of screening donors and processing.
As a last resort, Cassin went online, using Facebook and her website, to find healthy donors. That’s when people started to respond.
“We’ve had milk from as far as Nova Scotia,” said Cassin. Purolator is sponsoring milk shipment for Anaya from Canadian donors.
Cassin’s story may be extreme, but she’s not alone in needing donated human milk.
Emma Kwasnica, a Montreal breastfeeding activist, cites some common reasons. Some mothers are physically unable to breastfeed or have chronic low milk supply. Other times, the mother is hospitalized and can’t feed her baby. There are also adoptive families who choose to use human milk instead of formula because it’s healthier.
“A friend of mine was working in Indonesia and adopted a baby boy. He’d asked me ‘Do you think I could feed this baby breast milk instead of infant baby formula?’” said Kwasnica. She posted it on her Facebook status, and sure enough, a friend responded.
“There’s been eight lactating mothers who had been feeding this baby and he had no formula. He’ll be a year old in August.”
She thought, if this was something that could help one baby, it could help many others. Human Milk 4 Human Babies (HM4HB) was then born, an online network where people can donate and receive free milk. There are now 130 HM4HB communities on Facebook representing 52 countries.
Health Canada issued a health advisory last year alerting people of the dangers of sharing donated milk beyond a milk bank setting, where samples are repeatedly tested for safety. Issues include the possibility of transmitting diseases, like HIV, and food poisoning through contaminated milk.
Kwasnica said that with the spread of breast milk black market Health Canada should have created milk sharing guidelines instead. “(Mothers are) going to do this anyway, so why not give them the information to be able to do it safely?”
Before accepting donor milk, it’s not unusual for recipients to ask about their donor’s health, have blood tests done and to meet in person if possible. Many also do home pasteurization as an additional safety precaution.
“Families are absolutely weighing the risk,” said Kwasnica. “There’s no milk bank to turn to.”
Alberta, Ontario and Quebec are looking into establishing donor milk banks, said Frances Jones, coordinator of the B.C. Women’s Milk Bank.
“In the last fiscal year, (the Milk Bank) had 2,004 recipients, distributed about 55,000 ounces and had about 120 donors. We receive more requests than we can currently fill as we hear from families across Canada,” she said. “In the future, I hope there’ll be regional banks across Canada so any child in medical need could have access to donor milk.”
As for Anaya, she still has a deep freeze full of milk to last her a while. For now, it’s one less thing to worry about.