DYSART — While they sleep, identical twin girls Kambry and Keeley Ewoldt have no idea they are making history.
Swaddled and warm in an Iowa City neonatal intensive care unit, the tiny infants are among the most premature known surviving twins in the U.S., and are the most premature surviving twins born at University of Iowa Hospitals and Clinics.
Keeley James and Kambry Lee arrived 18 weeks early on Nov. 24, delivered at just 22 weeks and one day gestation.
“They would be clearly among the top four or five earliest babies ever delivered here. We had one at 22 (weeks) and zero (days) and another at 22 and one, but neither were twins,” said Dr. Jonathan Klein, a neonatologist and medical director of the NICU at University of Iowa Stead Family Children’s Hospital.
Late last summer, parents Jade and Wesley Ewoldt of Dysart were elated to find out they were expecting twins. Their family of four — including daughter Kollins, 3, and son Koy, 5 — would expand to six. Jade, 28, is a stay-at-home mom and Thirty-One Gifts consultant. Wesley, 29, is a pattern maker at American Pattern & CNC in Cedar Falls.
Jade’s pregnancy was smooth until 16 weeks gestation when the babies were diagnosed with twin-twin transfusion syndrome. TTTS is the abnormal formation of blood vessel connections between identical twins sharing a placenta. Those connections create uneven blood flow between the babies and can be fatal for both twins.
“(TTTS) is also very rare,” Klein said. “A lot of patients pass away before they are even born.”
At 17 weeks gestation, the twins underwent surgery in utero at Cincinnati Children’s Hospital to seal and disconnect the aberrant vessels. TTTS, even when treated successfully, often causes premature birth. That’s what happened with the Ewoldt twins.
Four weeks after the surgery, on Nov. 23, Jade’s water broke at home. She was exactly 22 weeks along.
“I was so mad and upset and scared,” she said. “I was just praying the girls wouldn’t be born at home.”
The 1-hour, 15-minute ambulance ride to UIHC felt like one of the longest rides of her life, Jade said. The ambulance crew told her if the babies were born along the way, they weren’t equipped to save them.
“I must’ve asked them a thousand times if we were there yet,” she said.
The right place
UI Stead Family Children’s Hospital is home to Iowa’s only Level 4 NICU — the highest level recognized by the American Academy of Pediatrics. It is among just 22 percent of U.S. hospitals that provide active care for infants born at 22 weeks gestation.
In 2016, among the nearly 4 million live births in the United States, 1,857 babies were born alive at 22 weeks, Klein said.
“For 22-week babies to survive, it’s incredibly rare,” he said. “Nationally, survival is around 10 percent. Here at (UIHC), our survival rate over the last 10 years is 65 percent, 650 percent higher than the national average.
“Many places consider babies less than 24 weeks incapable of survival. But we know it’s possible. And it’s one of those things we are now getting more recognition for nationally. I’ll be going to a national meeting to talk about what we do differently at (UIHC).”
Born too soon
At birth, Keeley weighed 1 pound and Kambry weighed 13.4 ounces. Each baby was about the length of a dollar bill.
“I’d never heard of babies being born this early,” Wesley said. “We didn’t have a lot of positive thoughts. They told us from the get-go this is going to be a roller-coaster ride.”
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Klein said it’s a huge team effort, from surgeons to obstetricians to neonatologists to nurses, to keep alive babies who are born so early.
“Every single organ system in the body is not designed to survive outside the mother,” he said.
Skin is so fragile it can tear under the most gentle touch. Eyelids are not yet formed. Respirators delivering the smallest puffs of air keep the girls breathing. A neuroprotective strategy developed by UIHC doctors for premature babies limits and monitors stimulation — such as light, sound and touch — to keep the babies’ stress levels low and limit swings in blood pressure.
“It’s overwhelming when you think about these things,” Jade said. “So much goes into making sure these two little girls stay alive.”
Kambry lost some weight after she was born, which is common among preemies. Her lowest recorded weight is 11.64 ounces — less than a can of soda.
Keeley had surgery to close a vessel that’s only necessary in uterto and, left intact after birth, can cause heart failure.
“It’s amazing the tremendous skills the surgeons have,” Klein said. “Our babies, at the time of surgery, are smaller than most adult hearts. It’s mind-boggling to think they are doing surgery around hearts the size of thumbnails.”
Mom Jade stays at the twins’ NICU bedsides most days, returning home a couple of days a week to spend time with her husband and other children. Family and friends help shuttle Koy and Kollins to and from school and activities, and babysit while Wesley goes to work.
“It’s a lot of places to be at one time. I’m just trying to do my best to hold it together for my family,” Wesley said.
It’s been that way for 57 days, and will be for many more. The earliest the twins will go home is their original due date — March 29. They’ll be 4 months old.
Beating the odds
Today the twins will be 8 weeks and 1 day old. The Ewoldts say they continue to take each day at a time, and aren’t yet thinking about long-term prognoses for Keeley and Kambry. For now, the girls are growing and progressing. As of Wednesday afternoon, Keeley weighed 3.1 pounds, and Kambry weighed in at 2.1 pounds.
Through faith, though, the parents remain hopeful.
“You just think of what they can be,” Wesley said.
“They’ve beat all the odds against them so far,” Jade added.
Statistics from the hospital’s NICU are on their side.
“We’ve followed up on many of these babies over the years,” Klein said. “The good news is, based on our neuroprotective care strategies, only 10 percent born at (UIHC) have long-term disability — blindness, deafness, cognitive disabilities.”
Klein said the probability and severity of long-term disabilities in premature babies can be predicted based on problems present at birth or shortly after, such as bleeding in the brain.
“In these girls, we’ve not seen that. The odds are in their favor.”
Nonetheless, Klein is cautiously optimistic.
“Until they’ve been off the respirator for over a month, we are still kind of day by day. They need to be able to gain weight without IV fluids. They have to be able to maintain their temperature. Usually this all comes together around the due date. I don’t start feeling comfortable until we get about a month from the due date. You can’t let your guard down.”