Parents

After losing son, mom makes historic, heroic breast milk donation

The story of a mom who made a history-making donation of more than 17,500 ounces of breast milk is not only inspiring, but also devastatingly touching.

Demi Frandsen’s pledge of 131 gallons of mother’s milk is the largest ever gifted to the Omaha Children’s Hospital and Medical Center Donation and Outreach Center in Nebraska.

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Mom donates record 131 gallons of breast milk in late son's honor

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Mom donates record 131 gallons of breast milk in late son's honor

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But it happened at a time when Frandsen and her husband Jeff faced a heartbreaking loss. Frandsen, 28, had delivered their son Leo via emergency C-section two months early. The baby weighed only 2 pounds, 10 ounces, and was diagnosed with a rare birth defect of the abdominal wall called gastroschisis. Leo lived for 10 months in the NICU of Omaha Children’s Hospital and Medical Center. He passed away on October 22, 2015.

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Courtesy of The Frandsen Family
Demi Frandsen kisses her son Leo, who spent 10 months in the NICU.

The first time Frandsen was allowed to hold Leo — named after her beloved great-uncle — was when he was one month old. “I will never forget the way his eyes locked in on mine when they finally got him into my arms," Frandsen told TODAY Parents. “It was the most beautiful moment of my life.”

Courtesy of The Frandsen Family
Demi Frandsen reading a book to Leo. Demi donated breast milk to honor her son.

Early on, she was able to pump so much milk that her lactation consultant, Tammi L. Martin, suggested milk donation as a wonderful option to help other small, sick hospitalized babies. “Demi knew the value of her milk and wanted to be able to share that with those who needed it,” Martin says.

For infants born with gastroschisis, any exposed organs can be placed back into the belly with surgery. However, in Leo’s case, his small frame and undeveloped lungs made his condition more complicated.

Courtesy of The Frandsen Family
The Frandsen family: Demi, husband Jeff, toddler brother Sawyer and baby Leo.

“Almost all of Leo’s abdominal organs were outside of his body, and even with artificial coverings, Leo frequently got infections and would become very ill,” Frandsen said. In addition, baby Leo was unable to ingest significant sums of mother’s milk, and could only withstand light swabs of the liquid on his lips.

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Originally from Idaho, the Frandsen family have been living in Omaha while Jeff Frandsen attends medical school. The family managed to balance the care of their toddler son Sawyer at home, and a very sick baby in the NICU, with the help of the couple’s mothers, who took turns flying out to stay with them.

Courtesy of The Frandsen Family
Leo Frandsen was named after his beloved great-great uncle.

“Jeff would split his time between school, home, and the NICU,” Demi says. “He often studied by Leo's bed while the baby napped.” To this day, Sawyer talks about his little brother. “He still prays for his baby brother in heaven and often asks me when we'll be with him again.”

Throughout their son's life, the Frandsen family documented precious moments of Leo with pictures and video. Additionally, Demi maintained her milk reserves with the expectation that he would one day make it home. “I was keeping my supply up for whenever he would be well enough to have my milk,” she said. She followed a strict schedule, initially expressing every 3 hours during his first six months. “To stimulate a let-down, I would hold a heated rice bag by my chest to mimic the warmth of a baby while looking at pictures of my sweet Leo,” she adds.

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In spite of her devastating loss, Frandsen continued to pump milk even weeks after she and her family lost Leo. “Telling my body to stop producing milk for a baby that wasn't here anymore was even more emotional than not being able to actually nurse him while he was here,” she said. “It's a mother's instinct to provide for her baby, and I had to make my body stop that instinct.”

Her steadfast commitment resulted in a record-breaking collection of 17,503 ounces of breast milk, donated over time in honor of Leo. “I know the desperate feeling of needing your baby to be okay,” said Frandsen. “I wanted to help those moms who felt that same ache in any way I could,” adding “if they needed my milk for their babies, I felt honored to be able to give one tiny contribution to that baby's fight.”

Courtesy of The Frandsen Family
Leo Frandsen gazes at his mother.

Omaha Children’s Hospital and Medical Center is one of more than 60 Donation and Outreach Centers partnering with Mothers’ Milk Bank, located in Arvada, Colorado — the company that eventually received, processed and pasteurized Frandsen’s hefty gift.

Lactation consultant Martin takes comfort in the fact that although Leo's life was short, he left behind him an amazing donation that will help other families. “It was something they did together,” Martin said. “It is wonderful how their gift of donation gives life, even after loss.”

If you are interested in learning more about human milk donation, and donating your excess milk, please visit Mothers’ Milk Bank at milkbankcolorado.org, or call 303-869-1888.

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