Our dear friend and lactation expert, Nikki Lee, has more than breastfeeding know-how to share; she is one of those ‘wise women’ whose example and storytelling shines a light for her own generation, this one and the next. Here, in her own words, is a recounting of one of her most generous moments and a testimony to the power and the spirit of the milk of human kindness.
In 1990, my friend Linda, 28 weeks pregnant with her second baby, was diagnosed with breast cancer. I remember sitting in the back of a car, being driven to a music festival, and hearing the driver say those terrible words; I promptly burst into tears. I didn’t want to face the possibility of Linda’s death but my experience as a nurse wouldn’t give me a break from the truth. Getting cancer while pregnant had a grim prognosis in those days. (Nowdays, things are different. http://www.breastfeedingalwaysbest.com/childbearing-cancer-and-chemotherapy/)*
Linda immediately went to the National Institutes of Health where she was diagnosed with inflammatory breast cancer, and enrolled in an experimental treatment. When she walked into the NIH, she already had metastasis to her pelvic bones. They said if all went well after the experimental treatment, she might get 3 years.
Being an intelligent and proactive woman, Linda scoured the area and found a sympathetic OB/GYN who would work with her to meet her goals of a vaginal birth for her premature baby. She and her husband also started talking to her baby inside, and to her 5-year-old daughter, explaining the situation and making whatever plans they could.
At 35 weeks, labor was induced so she could start chemotherapy. Unmedicated, she stood or paced throughout the entire labor to help her baby be born vaginally. It worked. After the birth, she hand expressed as much milk as possible and fed her baby, the first and only time she could do that. It wasn’t bad enough having cancer. She had nursed her first daughter for years; the loss of the breastfeeding relationship was one more nail in her heart.
When we talked about her situation, I was nursing my own little baby, and offered to pump milk for hers. She was grateful for the offer, and talked about it with the staff at the hospital where her premature baby was in the NICU. The staff terrified her about using human milk from another mother because of the potential risks of disease transmission.**
Linda and I had known each other for years; we were part of the same old-time music community and had spent time together at various concerts, festivals and music camps. Her husband officiated at my wedding; our husbands played music together. She knew that I had been in a monogamous, non-smoking, drug free relationship for years; still, after the hospital staff had frightened her, she was worried enough to ask me to have my blood tested. I was happy to do that; my blood tested free of any nasty viruses.
A local lactation consultant rented me a double electric pump at cost, refusing to make a profit once she heard the reason for the rental. I pumped once or twice a day in the morning, while breastfeeding on the other side. I still feel proud that my pre-pregnancy A cup gave 6 to 10 ounces per pumping session!
My family and I live in a large house in a Philadelphia suburb; over the years, it has become a rest stop for traveling musicians; our network of friends is centered around a love for folk music, particularly old-time music, although we also enjoy Cajun, Irish and swing traditions. (I met my husband while dancing in a clogging team, and ended up with one of those dancer/musician marriages that are common in our community.) Everyone that stayed with us rallied around Linda to create a milk transportation system.
By the time I had enough frozen milk bags to fill a cooler, somebody would be coming through town, willing and able to take the cooler to Linda, who lived in West Virginia. Other musicians and friends would bring an empty cooler back to me. Linda’s baby, my milk child, got at least one bottle of human milk a day for most of her first year. Linda was grateful to have breast milk to give her baby and made sure that not a single drop was wasted.
The only milk tragedy came when my freezer malfunctioned, and all the stored milk thawed. I was heartbroken at having to pour that precious milk down the drain. It was the right thing to do; the right thing isn’t always easy.
Pumping for my friend was easy. What was pumping once or twice a day when compared to what she was going through? It felt wonderful to do something useful and special for my friend.
Once, during a visit to Colorado to visit my mother, I brought the pump with me to keep up my production. I couldn’t figure out a way to get the milk to Linda from there, so I went to the Milk Bank in Denver. After hearing the story, they accepted my milk donation and told me it would be used for research.
Linda spent 11 months going through chemotherapy and hospitalizations. The drugs would make her sick; she would be hospitalized, and then recover. The cancer subsided at the beginning, and we were hopeful for a little while.
As the months passed, side effects from the chemotherapy became increasingly devastating. Linda found that acupuncture treatment before the chemotherapy brought some relief from the side effects. She also discovered another source of relief; my milk, used in a way we never would have imagined. Linda drank it. She told me it was the only thing that didn’t hurt going down her inflamed esophagus and it soothed her GI tract.
Linda went from being a chubby woman to the svelte and shapely person she had dreamed of being her whole life, but for all the wrong reasons. The cancer was burning her up. It would subside for a while, and then return with renewed vigor once the effects of the chemotherapy went away. After 11 months, Linda said, “I don’t want to live any more. It’s too hard.”
Linda died eleven days before her baby’s first birthday, at the age of 38. I am a Facebook friend with her daughter, my milk child. I honor Linda’s life by telling our story when the situation warrants. Human milk is Miracle Milk; a gift from the heart.
*BFB: The number of pregnant and new moms with breast cancer is rising, and with it, the need for safe donor milk for their babies who are compromised due to early delivery or exposure to chemotherapy in utero. Not knowing that donor milk is the next best substitute to a mother’s own milk — especially in cases like these — is a Booby Trap — a barrier that threatens to jeopardize our health. Best for Babes has started a fund to help ensure that expecting and new moms with breast cancer get all the human milk they need for their babies to thrive: The Miracle Milk (TM) Fund for Jamie Thomas. Please consider donating generously this holiday season.
**BFB: Moms should know that informal milk sharing can pose serious health risks if the donor is a carrier of certain communicable diseases and that the safest alternative to a mother’s own breast milk is screened, pasteurized donor milk from one of the nations human milk banks. However, until we truly appreciate the value of donor milk and make funding and stocking our milk banks a health priority, our milk banks will continue to be underfunded and their stores perpetually low. Eats on Feats and Human Milk for Human Babies are informal milk sharing networks trying to fill that void for moms who are aware of the risks of informal milk sharing and can make an informed feeding decision.
What stories of the milk of human kindness do you have to share?