Robillard describes Chase as her soul mate, a “silver lining” after facing life-threatening complications near the end of her pregnancy. She developed placenta accreta, a condition in which the placenta grows too deeply into the uterine wall to fully detach, putting the mother at risk for excessive blood loss. Robillard needed a hysterectomy after the birth and faced a slow recovery.
Born at 36 weeks, Chase spent three weeks in the NICU. Robillard was grateful when he received pasteurized, human donor breast milk, recommended at the hospital for medically vulnerable babies when a maternal milk source isn’t available. As a NICU nurse, she knew it contained antibodies that could help protect her baby from serious illness she had witnessed this firsthand with infants in her care. The milk also served as a bridge to Robillard’s goal of breastfeeding while she established her own milk supply, which is often delayed in preterm deliveries and complicated maternal recoveries.
Chase took to breastfeeding. In the quiet early morning hours, the pair seemed to inhabit a universe all their own. Chase’s tiny hand would reach for and embrace hers while he fed. Robillard started to experience the bliss she’d heard described by friends who loved nursing, but that had eluded her before, as it does some moms. First-time parenthood with Jack had been a blur of sleepless nights for her and her partner, Mike Goncalves. But with Chase, the pace was slower and Robillard savored the time.
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Looking back, Robillard is grateful for every minute with Chase. There would never be enough.
One day last summer, when Chase was almost 7 months old, a mild cough and runny nose suddenly turned into a spiked fever and lethargy. At the hospital, he was diagnosed with bacterial meningitis, an illness caused by inflammation of the membranes that protect the brain and spinal cord. Chase suffered brain damage. Within a few days, he was gone.
“It completely shattered our world,” Robillard says. In the midst of that grief, she made a decision. “I didn’t know what to do with myself,” she recalls, “but I immediately knew that I wanted to donate his milk our milk to the babies that need it.”
She packed up what she had, continued to pump for a month, and shipped it to Mothers’ Milk Bank Northeast, a nonprofit that provides pasteurized, safety-tested donor milk for families and hospitals along the East Coast, including for the Brigham, where Chase was born.
Chase’s family — dad Mike Goncalves, brother Jack, and mom Lindsay Robillard — treasures his memory.
JOANNA FIONA CHATTMAN FOR THE BOSTON GLOBE
Robillard is part of an invisible village of mothers whose intimate efforts help support babies and mothers where health care can fail them: at their most vulnerable.
Over the past two decades, donor milk has gone from once-largely taboo to recommended standard of care for fragile infants. It’s available at all Level 4 (the highest level of care) NICUs in Massachusetts and at 90 percent of NICUs nationwide, with 33 nonprofit milk banks distributing nearly 10 million ounces of donor milk in 2023.
Yet, many potential donors and recipients have never heard of donor milk, and likely won’t, unless they spend time in a NICU. Like many areas of the intertwined maternal-fetal health infrastructure, broadening understanding and access is an ongoing effort.
Breast milk donation is neither complicated nor without effort. Approval from a milk bank requires screening via a blood test and a medical history. Not everyone will meet the medical criteria: Milk banks try to limit obstacles to donation yet must adhere to strict regulations (the FDA cautions against informal milk sharing with strangers).
Along with successful screening comes the actual pumping and collection requiring labor and time. At its core, it’s personal. “There’s a level of intensity with milk donation that
people don’t really imagine,” says Deborah Youngblood, CEO of Mothers’ Milk Bank Northeast, one of the largest accredited milk banks in the country. “It’s intimate and it’s very powerful.”
Youngblood spends part of her days listening to donors’ stories. They‘re often tearful as they talk about their babies, pregnancies, postpartum journeys, and personal relationships to breastfeeding.
CEO Deborah Youngblood at Mothers’ Milk Bank Northeast. JARED CHARNEY FOR THE BOSTON GLOBE
Many women, such as Robillard, are recipients-turned-donors and have spent time in NICUs. Some have lost an infant, often from birth or post-birth complications — approximately 30 to 40 donors at Mothers’ Milk Bank Northeast each year are bereaved
Senior lab technician Hassan Omar fills bottles with donor milk to be pasteurized. JARED CHARNEY FOR THE BOSTON GLOBE
An exclusive human milk diet, ideally from a maternal source, dramatically reduces the occurrence of NEC. And a very preterm or very low birth-weight newborn fed with pasteurized donor milk fortified with essential nutrients in the NICU has half the risk of getting NEC compared with one who’s fed formula, according to the National Institutes of Health.
Breast milk, including from donors, can also act as preventive medicine, according to Dr. Robert Insoft, neonatologist and chief operating officer of Franciscan Children’s Hospital in Brighton. An early advocate for integrating donor milk in NICUs, Insoft is the former medical director of Mothers’ Milk Bank Northeast and is the chair-elect of its board.
“If a baby doesn’t get NEC,” Insoft says, “you‘re saving hundreds of thousands of dollars in health care costs that can develop throughout an infant’s life as a result of complications and surgeries.”
While the benefits of breastfeeding are well known, the reality is that for many reasons, reaching individual or recommended goals isn’t always realistic, especially without support. Formula can be a viable alternative and sometimes the best option for a family.
Assistant lab manager Madeline Wickers and Omar seal bottle caps. JARED CHARNEY FOR THE BOSTON GLOBE
Mothers’ Milk Bank Northeast continues to establish new local partnerships aimed at health equity and increasing access to the “village” created by mothers who donate. Lawrence General Hospital is the latest to carry free donor milk for families through a partnership funded by the Massachusetts Attorney General’s Office Maternal Health Equity Grant, which aims to reduce disparities by increasing access to culturally competent maternal health support services.
The milk bank has translated key materials into multiple languages: Arabic, Brazilian Portuguese, Cape Verdean Creole, French, Haitian Creole, Spanish, Somali, and Vietnamese; and introduced professional medical interpreting services to eliminate language barriers.
Few people understand the conflicting emotions permeating a NICU like the parents who’ve spent time there. Inside, devastating struggles are often met with unparalleled compassion, and signs of relentless hope are present in the face of hour-by-hour uncertainty.
Ashley Mongillo, 34, remembers trying to take each day as it came, reminding herself that one day, her baby would be home. Her son, Matthew Vagnini Jr., nicknamed MJ, spent his first 127 days in the NICU of Yale New Haven Hospital. Nothing had gone as planned. Twenty-six weeks into the pregnancy, an ultrasound turned into a hospital stay and a diagnosis of severe preeclampsia. Mongillo’s blood pressure rose so high she was at risk for a stroke and needed a caesarean section at 27 weeks. MJ weighed 1 pound, 6 ounces, putting him at elevated risk for NEC and other medical challenges.
It was then that Mongillo first learned of donor milk, which was given to her baby.
MJ, now 2, didn’t develop NEC, but he had challenges with feeding he hadn’t had time in utero to learn to suck, breathe, and swallow simultaneously, so doctors put in a feeding tube. He couldn’t keep up with his mom’s robust milk supply once it came in, but Mongillo saw it as her first opportunity for agency in her difficult pregnancy and postpartum journey.
Senior lab technician Hassan Omar holding a bottle of donor milk at Mothers’ Milk Bank Northeast. JARED CHARNEY FOR THE BOSTON GLOBE
“For me, being able to actually pump and being able to donate, it was a sense of having some kind of control in this whole crazy situation,” says Mongillo, who donated 1,628 ounces of milk over the course of six months.