Her milk was the only thing Jen Canvasser could give her babies.
Born at 28 weeks, three months prematurely, Zachary and Micah weighed less than two pounds and were rushed to the neonatal intensive care unit (NICU). The boys were born so early that Canvasser’s milk hadn’t yet come in. Canvasser may have been a first-time mother, but she knew this: her babies weren’t going to receive formula. She believed that milk – specifically, her milk – would give them the best start in life.
Doctors told her to try to pump every two hours to get her milk to come in. So every other hour, around the clock, Canvasser assembled the pump in her hospital bed, attached it to her breast, and willed the milk to emerge. Nothing happened. Her long hair went unbrushed; sleep deprivation and fear lined her bright blue eyes with dark circles.
“It was really stressful,” she says. “These little itty bitty guys really needed the nutrition and I was told they would be given formula if my milk did not come in.”
After two days, during which the boys were given only minimal nutrients through tubes into their veins, Canvasser finally produced a few milky drops. After filling a tiny syringe, husband Noah took the elevator down to the NICU and dabbed his wife’s milk on his sons’ lips. Even after another day there still wasn’t much milk coming, although it was enough for the tiny boys, who, like most preemies, only took a teaspoon at a time. With the children hooked up to a dizzying array of tubes and machines, their parents couldn’t even hold them. Their mother’s milk was their only physical contact.
In that first, tense, terrifying week, Zachary and Micah’s doctors came to Canvasser with more bad news: her milk wasn’t providing enough nutrition for the twins. The doctors wanted to add a high-calorie fortifier to it to help the boys grow and develop. Canvasser agreed.
But instead of getting better, the boys began to get worse. They stopped breathing while asleep. They began to have trouble digesting. Canvasser’s worry turned to panic on the cold Friday afternoon of the second week when Micah began spitting up. Things got worse over the weekend. By Sunday morning, his belly had become swollen and he was constantly throwing up. On Sunday afternoon, Micah was rushed to the operating room to have part of his bowel removed. Just two weeks old, he had developed a life-threatening disease called necrotising enterocolitis, which had killed parts of his intestines. The infection was so severe his kidneys began to fail.
Advances in caring for premature babies and very-low-birthweight infants (defined as weighing less than 1,500 grams at birth, or 3 lb 5 oz) mean more of them survive longer. But this vulnerable group still has a high risk of necrotising enterocolitis. It affects around 1 to 3 per cent of infants in the NICU and 7 per cent of very-low-birthweight infants, and up to one-third of those infected will die. Numerous research studies have shown, however, that an all-human-milk diet for premature infants significantly reduces the risk.
With Micah seriously ill, Canvasser finally asked the doctor about the fortifier in the boys’ milk.
“They called it a human milk fortifier. I assumed it was some type of benign extra vitamins or something that they were adding. I had no idea what it was,” she says. “So I asked, ‘What is this fortifier? Can you show it to me?’” The bottle they showed her was a brand of formula.
After searching the internet in the wee hours of the morning, Canvasser found a fortifier made from human milk and persuaded Micah’s doctors to switch after two weeks on the formula, but his tiny body was already hopelessly damaged. At 11 months old, having spent 10 of those months in intensive care, Micah died from complications of necrotising enterocolitis.
Micah’s brother Zachary, also given formula during his NICU stay, is now a healthy, thriving three-year-old. Still, Canvasser can’t shake her fear that the formula had something to do with Micah’s death, although there’s no way to be sure.
Statistics suggest that Micah would have had a better chance on an all-human-milk diet rather than being fed with formula. But when a mother’s own milk isn’t providing enough nutrition for a vulnerable baby, the temptation is for medical staff to turn to formula rather than finding a source of human milk. Breast milk donation is on the rise, but will there ever be enough supply for all the babies who need it?
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