Treatment developed by UI experts helped save Evelyn
May 22, 2024 by Molly Rossiter
Eight-and-a-half ounces.
That’s roughly the weight of two sticks of butter, a roll of quarters, or the cell phone you may be using to read this story.
It’s also how much Evelyn Eilers weighed when she was born 17 weeks early at University of Iowa Health Care in September 2023, making her the smallest surviving infant in the U.S., and one of three tied for third-smallest in the world, according to the Tiniest Babies Registry.
More precisely, Evelyn weighed 240 grams, or 8.46 ounces. When she went home at 7 months old, she weighed 7 pounds 8 ounces—the size of an average full-term newborn.
Evelyn’s parents, Emily and Ted Eilers of Solon, knew their daughter had the best team working for her. The survival outcomes for extremely premature infants at UI Health Care Stead Family Children’s Hospital are among the best in the world. And when Evelyn was diagnosed with a usually fatal condition, a treatment protocol designed by UI doctors and researchers saved her life.
“Even when she was sick, the doctors and nurses had already done so much to get her to that point, I was confident they would get her through it,” Ted says. “And they did. I don’t think she would have made it if she was anywhere else.”
A surprise pregnancy
Ted and Emily hoped to start a family someday but had no plans to do so in 2023. Emily was a full-time nurse in the medical intensive care unit at UI Health Care’s university campus and had plans to go to graduate school to become a nurse anesthetist.
A week before starting graduate classes, Emily found out she was pregnant.
The first few months of the pregnancy went fine, but during an ultrasound after Emily's 16-week checkup, doctors discovered Evelyn was having trouble growing. At the time of the ultrasound, she was in the first percentile for growth. Doctors cautioned that she may not make it to 24 weeks, and if she did, there would be weekly ultrasounds from that point on.
At the same time, Emily was becoming very aware of Evelyn’s movements.
“She was very routine, if she wanted to get my attention she’d kick or punch, so I was getting used to feeling her moving around in there,” she says.
Ted and Emily waited expectantly for the 24-week mark but at 23 weeks, Emily started noticing a decline in Evelyn’s movements. She dismissed it at first as having been busy and maybe not paying as close attention, but when the movements didn’t increase, she began to worry.
An emergency birth
The Saturday after Labor Day—Sept. 9, 2023—Emily and Ted were in Iowa City running errands and she decided to call the hospital, even though she had an appointment in two days.
“I remember being told that if I called in with any concerns, I was to tell them I’d been given a severe growth restriction diagnosis,” Emily recalls.
She relayed the information to the nurse on the phone, and “they said if it hadn’t been for that they would have probably told me to wait for my appointment, but instead they told me to come in to make sure everything is OK.”
They arrived at the hospital at 10 a.m. At first, everything was fine. Evelyn’s movements had picked up.
“Everything seemed fine for the first hour,” Emily says, “but then once things started happening, they really started happening.”
Teams of doctors and nurses came in and out of Emily’s room talking about different parts of the process. Among them were neonatologist Timothy “TJ” Boly, DO, and neonatology fellow Ashley Schlapper-Sevcik, DO, who talked to Emily and Ted about what to expect with an early birth.
“We talked about a lot of scary things: the risk of death, the risk of complications that come with prematurity and not being fully developed,” Boly says. “And the scariest part of the conversation is about measurements; when we talk about measurements when the baby is still inside, those are imperfect. Sometimes babies come out and they don’t weigh as much as what we were expecting, and my ability as a neonatologist is limited by the size of equipment I have.”
“So even though we try our hardest for every baby, sometimes babies are just too small, and the breathing tube I want to use just isn’t small enough,” he says.
Within a few hours Evelyn’s heart rate started to drop and the care team called for an emergency cesarean section. By 3 p.m. that day, Evelyn was born and taken to the neonatal intensive care unit at the children’s hospital.
Life-saving treatment from UI researchers
Despite Evelyn's tiny size, she was able to clear her first major hurdle: her head and mouth were able to accommodate the breathing tube.
“She was definitely one of the smallest babies I’ve ever seen,” Boly recalls. “I told her family right away that the best thing about her being small was that her head was bigger than the rest of her and her mouth was a normal and nice, big size, so I was able to get the breathing tube in very quickly.”
The breathing tube helped Evelyn’s still-developing lungs work, but she wasn’t out of the woods just yet. Her lungs and the rest of her organs still needed to continue to develop outside the womb as they would if she were still inside.
“There are a lot of things that go into (caring for) really small babies, but it’s essentially managing every body system every single day—not even just on a day-to-day basis, but sometimes an hour-to-hour basis,” Boly stresses.
There were other obstacles to clear: During her first week, one of Evelyn’s lungs was deflating a bit more than the other, causing the open lung to endure more pressure from the ventilator. She was urinating more than she needed to be, causing her to become dehydrated.
But the biggest hurdles came when she was about a month old and developed two new conditions both of which carry high death rates. First, Evelyn developed necrotizing enterocolitis (NEC), a life-threatening infection in her intestine that was causing damage. In addition, the NEC led her to develop capillary leak syndrome, a rare but historically fatal condition that caused some of her smallest blood vessels to break apart and leak fluid into surrounding tissues.
It was amazing to see her just become a baby who liked to interact in real life and loved having people around
- TJ Boly, DO, Neonatologist
Pediatric surgeons removed the damaged part of her intestine, and immediately following surgery Boly implemented a new treatment protocol for the capillary leak syndrome that was created by Boly and other physician-scientists at the University of Iowa. The treatment involves three medications: a high-dose steroid to reduce inflammation, an asthma medication that has been found to heal the capillaries, and an IV immunoglobulin to help the immune system clear infection.
The UI team started using the protocol in infants in 2021. Boly says that in the five years prior, the mortality rate for capillary leak syndrome was 100%. With the new treatment, he says, it's just 20%.
Soon after surgery and the treatment for capillary leak syndrome, Evelyn started to thrive.
“It was amazing to see her just become a baby who liked to interact in real life and loved having people around—she was a smiley, happy girl almost immediately,” Boly says. “She was able to tolerate getting more and more milk into her belly and to grow. And then she just flourished and developed.”
A happy homecoming
More than seven months after her birth, Evelyn was able to go home. She’s still on constant oxygen and is receiving nutrition through a feeding tube, but she is otherwise a typical newborn. She smiles at the sound of Ted or Emily’s voice, she lets them know when she’s not happy or comfortable, and she draws curious sniffs from the family’s dogs.
“Home life was an adjustment at first,” Emily recalls. “We took for granted just how much the nurses and the care team were doing for us. But now we’re in the swing of it all and we have a routine down.”
So does Evelyn, she says.
“She’s fitting right in, she loves being home,” Emily says. “I don’t think she likes leaving the house much.”
Ted says life has been a whirlwind.
“We weren’t expecting to have a child, then we found out Emily was pregnant,” he explains. “Then we find out at 16 weeks there might be a problem, and then we’re hoping to make it to 27 weeks.”
He is confident they were in the best place for Evelyn and is grateful to have the NICU team so close.
“We didn’t know anything about small babies, but we got extra lucky to have been where we were,” he says. “From the beginning, we knew we were in the best hands. They gave us an idea of how things might go well or how they might not, and they were there for all of it.”
As for the title of tiniest surviving baby in the United States?
“That doesn’t mean a lot to us,” Emily says. “To us, she’s just Evelyn.”
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