For the most fragile babies, there's one thing that's almost guaranteed to boost their chances of survival: breast milk.
So a nonprofit in Nashville is trying to make it easier for infants to obtain it when their mothers can't produce enough. Their goal is to open a breast milk bank, similar to a blood bank, that would store and distribute donations from other moms.
If their vision is realized, it would serve babies like Ruby Martin, who spent most of the summer in the neonatal intensive care unit at Saint Thomas Midtown Hospital.
On one afternoon in mid-August, when she was 11 weeks old, her parents were changing her diaper. Ruby didn't seem thrilled about being pried out of her onesie. It was her third day wearing real clothes, her father said.
"Alright, Ruby, down to your skivvies," said her mother, Jaime, as Ruby squirmed. "I know, peanut. I know it's no fun."
Jaime and her husband, Sam, were expecting to do this kind of parenting task. They were not expecting to do it in the NICU, surrounded by machines that beep ominously whenever Ruby moves too much.
But very little has gone according to plan in this pregnancy. First, there were two miscarriages. Then there was an arduous process of in vitro fertilization — which worked, but Jaime went into labor much too early, around 24 weeks.
"The whole goal was to keep her in as long as possible," she said. "Every hour at that point was imperative to her lungs forming and her heart working."
Ruby was born three and a half months early. She weighed 1 pound, 9 ounces — so small that doctors recorded her weight in grams.
"She had very red, almost gelatinous skin," Jaime says. "His wedding ring went around her arm."
Ruby was placed in, essentially, a baby incubator, where Jaime wasn't allowed to even touch her. That was hard enough.
But on top of that, Jaime couldn't produce breast milk — which would become another source of stress in a problematic pregnancy.
'The Bane Of Our Existence'
Jaime tried pumping every few hours but could only produce drops of milk. Eventually, her doctors told her she would be more useful to Ruby if she stopped pumping and simply stayed well-rested.
The challenge was not entirely a surprise, she said.
"I had a breast reduction when I was about 23," Jamie said, which was 14 years ago, "and back then … for lack of a better term, they had to take everything apart. And the likelihood of you being able to breast feed, as they told me at 23, was highly unlikely."
At the time, she thought that was no problem. If she had a baby one day, she'd just put the baby on formula.
But now that she has a tiny, pre-term infant, this is a bigger issue. The reason: Babies of Ruby's size are at a high risk of a debilitating gut disease called necrotizing enterocolitis, or NEC.
"NEC is the bane of our existence here in the NICU," said Joann Romano-Keeler, a private neonatologist, employed by Pediatrix Medical Group of Tennessee, who works at St. Thomas Midtown.
Romano-Keeler previously studied NEC for several years at Vanderbilt University, "and in all of the years of research that's been done, including some of the research that I've done myself, the only protective factor that we've discovered for NEC is breast milk," she said.
This is especially relevant in Tennessee, where 11 percent of babies are born early, according to the CDC — one of the highest rates of preterm births in the country.
Romano-Keeler has seen the consequences firsthand: Her team ran out of breast milk for one critically young baby they were working with, and when they couldn't reach the mom to get more, they initiated formula feeding.
"Over the next 24 hours the baby developed NEC, and it was a devastating infection," she said. "That baby died."
Creating A Culture
That experience, along with her research, shook Romano-Keeler. She became a board member of a nonprofit — called the Mothers' Milk Bank of Tennessee — that's hoping to open a breast milk bank in the state.
Right now, there are banks in about half the states in the country. They take donations from mothers who overproduce, pasteurize the milk and sell it primarily to hospitals, where it feeds the neediest babies.
The nonprofit has already opened "donor depots" in Tennessee, where moms can donate milk, but it's currently being shipped to a bank in Austin, Texas, for processing. That's also where St. Thomas Midtown buys its donor milk, Romano-Keeler said, so having a bank located in Nashville would decrease the turnaround time and the cost of shipping.
And there's a bigger ripple effect too, said Maryanne Perrin, who researches donor breast milk at the University of North Carolina at Greensboro.
"A couple of studies now have shown that if there is a milk bank in the state, the hospitals are more likely to be using donor milk," she said. "It's creates this culture where you recognize how important human milk is."
Despite all the research about the benefits of breast milk for high-risk newborns, hospitals are still reluctant to pay for it, Perrin said. It's not cheap: around $4 an ounce.
"We think of it as a food primarily, but in this population of really sick infants, it is a medicine."
Having a bank in-state changes the mindset, she said. Mothers are more likely to donate, talk to their friends about it — and, importantly, ask their hospitals to provide more donor breast milk if they can't produce it themselves.
That's what happened with Ruby Martin. At St. Thomas, doctors have to cut off donor breast milk for babies in the NICU at a certain number of weeks, because they don't have enough to go around.
Ruby's dad, Sam, considered buying more out of pocket, even though they had large medical expenses looming. They finally implored their doctor to give them extra, who had enough of a reserve to help them.
"She said, OK … we'll go ahead and support Ruby for an extra couple of weeks to get through this high percentage NEC possibility," he said.
Ruby finally did transition to formula in the NICU, and to her mother Jaime's relief, Ruby has stayed healthy — no digestive problems here, Jaime said.
"The other day she pooped and it went all over me, and I was so happy because it's one of the first normal things that's happened."
But for the sake of future mothers, she said, she hopes donor breast milk will become more prevalent. It would be one less concern during an incredibly stressful time.