Mother from Idaho makes historic breast milk donation following son's death

(Courtesy Demi Frandsen)


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IDAHO FALLS, Idaho — A woman born and raised in Idaho Falls is making news around the world for her heroic and historic donation of breast milk.

Demi Frandsen, 28, and her husband, Jeff, 27, have been living in Omaha, Nebraska, while Jeff attends medical school. In the summer of 2014, the Frandsens learned Demi was expecting their second boy.

“When we went to find out the gender, the doctors told us he would have a rare birth defect of the abdominal wall called gastroschisis,” Frandsen told EastIdahoNews.com. “They were pretty sure they’d be able to fix it within the first few weeks of his life.”

Leo was delivered via emergency C-section two months early and weighed only 2 pounds, 10 ounces. Usually infants born with gastroschisis can have any exposed organs placed back into the belly with surgery. However, in Leo’s case, his small frame and undeveloped lungs made his condition more complicated.

“He was a lot smaller than they had anticipated, and there were a lot more of his organs that were exposed,” she said. “Doctors tried to keep his organs protected while he grew.”

For the next 10 months, Frandsen stayed with Leo in the NICU of Omaha Children’s Hospital and Medical Center. She continually pumped breast milk hoping her son would be able to drink it.

Demi and Jeff Frandsen with Leo and their 3-year-old son, Sawyer. (Photo: Courtesy Demi Frandsen)
Demi and Jeff Frandsen with Leo and their 3-year-old son, Sawyer. (Photo: Courtesy Demi Frandsen)

“I was pumping so I could always have a fresh supply for him,” she said. “I never really thought of stopping because it was the one part of the fight that only I could do. I would come in every day and see him doing everything else so if he was going to keep doing it, I would keep doing it.”

Frandsen was able to pump so much milk that her lactation consultant suggested milk donation as an option to help other sick hospitalized babies.

Omaha Children’s Hospital and Medical Center is one of more than 60 Donation and Outreach Centers partnering with Mothers’ Milk Bank, the company that eventually received Frandsen's excess milk.

“I continued to pump throughout his whole life, and I would donate the milk he wasn’t able to have,” Frandsen said.

Frandsen admits there were difficult moments as she longed for her son to be healthy and strong enough to drink the milk she was producing.

“I would pump next to friends nursing their babies or I would be at church in the mothers’ lounge plugged into the wall pumping while other mothers had their babies nursing,” she said. “It was very emotional knowing, for the most part, he wouldn’t be getting any of it.”

Leo was born with the rare birth defect gastroschisis which creates problems with the abdominal wall. (Photo: Courtesy Demi Frandsen)
Leo was born with the rare birth defect gastroschisis which creates problems with the abdominal wall. (Photo: Courtesy Demi Frandsen)

Leo passed away Oct. 22 at 10 months old. He was buried in Idaho Falls.

Despite the Frandsens’ loss, she decided she would continue to pump and donate her milk to other babies.

“I still had such a large supply, and my body was still producing so much that it took a while to stop,” Frandsen said.

In the end, Frandsen learned she had donated 17,503 ounces — 131 gallons — of breast milk. It was the largest ever gifted to the Omaha Children’s Hospital and Medical Center Donation and Outreach Center.

Last week, Frandsen was honored as part of World Breastfeeding Week. Her story has been shared with dozens of media outlets — including TODAY.com, The Sun in the United Kingdom, People magazine and others.

“Being able to share Leo has been helpful because he’s an important part of this world and now, finally, the world is seeing that,” Frandsen said. “We really miss him, and we miss the hope he brought into our lives, but we believe we’ll have him again.”

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