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Continued: Sydney's legacy: The milk of human kindness

  • Article by: KIM ODE , Star Tribune
  • Last update: April 16, 2010 - 3:11 PM

Somewhere, in a hospital's intensive care unit, Sylvie Stephens' breast milk is trickling drop by drop into a baby she will never know.

Stephens had saved the milk for her own little Sydney, hoping against hope that Syd-Syd could someday grow healthy enough to drink it from a bottle instead of having it seep through a tube into her tiny tummy, one teaspoon each hour.

But Sydney died at the age of 6 months and a day, of complications related to a congenital heart defect.

Stephens, 34, was left with her grief, but also with a freezer full of breast milk she had expressed and stockpiled over those six months. "It was something my body made just for her," she said.

That milk now is Sydney's legacy, donated to a program that uses mothers' milk for preemies who need that unique elixir of carbohydrates, protein, fat, vitamins, minerals and antibodies.

"Liquid gold," said Mark Spitzack, coordinator of the Milk Bank at Fairview Health Services in Minneapolis. Most of the bank's donated milk comes from mothers who simply produce more than their babies need -- a determination that requires their pediatrician's approval. However, there are a half-dozen others whose babies have died while in intensive care and who have chosen to donate the milk they'd saved so that other babies might grow strong enough to leave the hospital. Stephens is one of those moms.

A 90-minute ritual

Halfway through her pregnancy, Stephens found out that Sydney's heart wasn't right, "but I was either naive or optimistic that everything would turn out all right," she said. Sydney emerged on March 14 last year, weighing 7 pounds and 7 ounces.

"She always looked so healthy and chunky, which was a gift from God because I never treated her like she was sick," Stephens said. "Compared to the other babies in the ICU, she looked like the biggest kid on the playground." But after two days, it was clear that Sydney was very ill. She was transferred to Children's Hospital in Minneapolis.

Stephens nursed her for 10 days, but as Sydney's breathing became more rapid, she couldn't swallow fast enough. "Imagine trying to chug down water after running 3 miles without stopping," Stephens said, trying to describe what her baby faced. "I would still offer my breast to snuggle, but the doctors gave her mother's milk through feeding tubes after that." They fortified the milk to make it even more caloric and dense with nutrients.

Stephens could have stopped expressing her milk or, for that matter, saving the excess. "I guess it doesn't make much sense, but a lot of the reason was, I wanted that constant in my life," she said. "There were always nurses or doctors helping with everything else, and this was the only thing that only I could do for her."

Stephens expressed several times a day, spending about 90 minutes all told. In one of life's curious twists, her slight figure proved to be a mighty dairy, producing high-fat milk at a high volume. Dutifully, she poured it in small bottles, labeled it and froze it. An engineer by trade, Stephens even graphed her production, to the nursing staff's amazed amusement.

Fairview's Milk Bank is in its fourth year, and last year sold about 205 gallons of breast milk to Prolacta Bioscience, a biotech company based in California that fortifies the human milk to provide consistent calories and nutrients. "It's so meaningful for those moms, sort of a last and lasting legacy for their babies," Spitzack said.

Donations from mothers whose babies have not survived are a slim percentage of the milk donated. Spitzack said the milk bank has about 20 donors at any given time, who donate a total of about 17 gallons a month. Donors have to pass a screening that includes blood and DNA testing. Proceeds from selling the milk to Prolacta go toward the milk bank's operation and to supporting lactation services.

Human milk is associated with increasing premature infants' resistance to several maladies, according to several studies, the most recent of which was published this month in the journal Pediatrics. The study, from the Harvard Medical School, said the lives of almost 900 babies could be saved each year if 90 percent of U.S. women breastfed their babies for the first six months.

The findings suggest that breast milk may help prevent stomach viruses, ear infections, asthma, juvenile diabetes, Sudden Infant Death Syndrome and even childhood leukemia. Lead author Dr. Melissa Bartick wrote that breast-feeding is less a lifestyle choice than a public health issue.

Dozens of tiny outfits

Stephens began saving her milk for Sydney's recovery, but as each day passed with little change, her intentions slowly shifted to caring for an infant whose days were numbered. She learned how to hold her while not dislodging the wires of the pacemaker in her tiny ribcage. She returned the bottle warmer and the infant carrier. But she kept the baby clothes she'd been given, and even bought more.

Every day, Sydney sported a different outfit, including a special Minnesota Vikings ensemble. "She only lived through the preseason," Stephens said with half a smile, then added how unexpectedly comforting it was in the sad weeks that followed to watch Vikings wide receiver Sidney Rice have a breakout season. "I just loved being able to yell, 'Sid-neeeyy!' "

Sydney never got to go home. By Aug. 17, "she was medically maximized," Stephens said, still steeped in the lingo of the hospital. She decided to give over every waking minute to her daughter, putting aside even the 90 minutes she'd spent expressing milk. "I stopped being her personal nurse and doctor and became a 100 percent mom. If I was awake, I was holding her." As Stephens wrote on Sydney's CaringBridge site: "The last month was spent in a perfect balance of living each day as if it were her last and as if there were more."

On Sept. 15, Sydney died. "I received the grace from God to let her go, and she was loved until the last moment," Stephens said. "I'll be with her again. I just have to figure out how to live the next 50 years."

When the Milk Bank asked if she'd consider donating the milk she'd frozen, she never hesitated. "This is Sydney's legacy," she said. "Every parent wants a legacy for their children, and this one is hers."

The 385 bottles of frozen milk filled three huge tote bags, totaling more than 12 gallons. Fairview sold this milk to Prolacta, which fortifies it to increase its protein, energy, calcium and other nutrients. Prolacta then sells this milk to intensive-care units nationwide.

Stephens has resumed her job as an engineer, working on a contract basis for companies to confirm the potency of drugs. During Sydney's life, Stephens grew acquainted with Nathan's Prayer, a website for families of children with congenital heart defects. She's now started her own advice page, "Ask Sylvie," where parents can send questions seeking a voice of experience (www.nathansprayer.com/category/soul).

Stephens had moved to Minneapolis from Florida with her husband during the pregnancy and, while they're in the process of divorce, she knows this is where she belongs. "Sydney lived and died here. She was a Minnesota baby."

Kim Ode • 612-673-7185

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