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Tuesday, Aug. 10, 2010

Evolving Techniques Improve Preemies' Chances of Survival

By Michael Vitez, Inquirer Staff Writer

See related photos taken by
Philadelphia Inquirer staff
photographer and Pulitzer-prize
winner Tom Gralish.

Eliahna Riley Silva was born at 10:50 a.m. April 18, weighing one pound and 3.7 ounces. Evan Edward Obert-Thorn arrived six hours later at a much more manly one pound, 4.7 ounces.

They are at 114 days and counting in the Abington Memorial Hospital Neonatal Intensive Care Unit, side by side, reigning over the nursery as king and queen.

An engagement between Evan and Eliahna might be considered premature, but their mothers joke that the wedding invitations could be adorned with a simple E, and nurse Sharon Houlihan noted, "It's like an arranged marriage from the isolette."

Eliahna is a pink and portly six pounds now, and her mother, Andrea Silva of Doylestown, absolutely loves it when nurses walk by and gush, "She's so huge." The week Eliahna was born, her father, Josh Silva, slid his wedding ring over her foot and all the way up to her thigh.

Evan, at five pounds, can now suck, swallow, and breathe with the best of babies, and has passed every test required for graduation. As soon as he gains seven ounces, enough for hernia surgery, he will spring this joint.

Both babies should be heading home by week's end, perhaps even on the same day - fitting, after all this time.

These "micro-preemies" were born at the gestational ages of 23 weeks and five days for Eliahna, and 23 weeks and three days for Evan. A normal pregnancy is 40 weeks.

At birth, their chance of survival was one in five, doctors say. Half of such babies that do survive, studies show, suffer lifelong disabilities, from retardation to blindness to lung and digestive problems.

Doctors say that Evan and Eliahna have run the gauntlet comparatively well, surely in the healthier half, and that there's nothing to indicate they can't lead happy and healthy lives. Only time will tell.

Doctors also say Evan's and Eliahna's chances of doing well are better than they would have been five years ago, maybe even five months ago, because of changes in neonatal intensive care.

 

Eliahna and Evan

Andrea Silva grew up in the Philadelphia area and earned her doctorate in exercise science and physiology in Utah, where she met her husband. She was a professor in Wisconsin when she got pregnant.

They had just decided to move back to the Philadelphia area because Josh, a consultant, was in Philadelphia all the time working with Comcast on Hispanic sports marketing. Andrea was visiting her mother in Doylestown for a week in March when her water broke at 18 weeks.

Doctors told her she'd almost surely miscarry and there wasn't much they could do. She just had to hope she could hold off delivery to 24 weeks, the edge of viability.

She and Josh prayed.

When their daughter arrived, they named her Eliahna - Hebrew for "God has answered."

She was 11 1/2 inches - the length of a Barbie doll. "Her skin was so thin, it was translucent," said Andrea. "You could literally see her heart beating through her skin."

Karrie and Ed Obert-Thorn are fifth-grade teachers living in Levittown. She had what is known as an incompetent cervix. At 20 weeks, she was ordered to bed rest. Three weeks later, she went into labor and delivered by caesarian section.

Immediately, like Eliahna, her son was put on a breathing machine, with IVs running through his stomach, a feeding tube down his throat. He was wrapped in plastic because at that age and size, the body can't generate or maintain enough heat to survive.

Karrie and Ed named him Evan, which means, according to a baby book they found in the maternity ward, "young warrior."

 

Walking a Tightrope

"When Eliahna was born," said Gerard Cleary, a doctor in Abington's neonatal intensive care unit, "if her lung were a tree, an upside-down tree, she had the big trunk, she had the branches, she had the little branches, but she had no leaves. We breathe in our leaves. Our leaves are what move the gas in and out.

"So we had to use the little tiny branches to exchange the gas, and when you do that, you can hurt the lung. Or, if you do it wrong, or do it too long, you can create lung problems that last her whole life. If you drive gas into the lung the wrong way, it can perpetually injure the lung."

Doctors and nurses walk a tightrope between helping babies grow and harming them with their interventions.

"Delivering perfect care day to day is how you grind out a good outcome in the NICU," said Cleary. "Eliahna is going to be here until she's about four months old. An adult in an intensive care unit that long almost never lives. But babies in intensive care units that long almost always live. And it's the day-to-day grind of delivering perfection that gets you there in the best shape.

"So then, if you zoom in on the day to day," he added, "how do you make the day to day perfect?"

Cleary thinks one answer is to improve the flow of information to the bedside.

Put a computer screen at the bedside, one that can collect and display information from all the monitors and machines around the baby and beyond.

Let data from the ventilator, incubator, and heart monitor flow right onto that computer screen. Let X-rays, physician orders and lab results be available, too, along with the baby's medical history.

Graphs of key measurements like weight and temperature will be displayed, making it easier to spot slight changes or trends over days and weeks. All with just a click or two.

The theory is to free the nurse from tracking down information elsewhere, from working as a scribe filling out flowsheets, from using a computer across the room.

Let the nurse focus more on direct care, on catching warning signs even earlier. The ICU nurse is the baby's best defense against a bad outcome.

"Imagine it as a cockpit," said Cleary, "where the pilot doesn't have to float around the plane to get all his data. It flows into him so he can operate the plane safely. . . . That's the idea. You can't be scattered and fly a plane."

The system took a year to put in place and is still imperfect, but Cleary hopes that over time, results will show babies do slightly better because of it.

 

Mirror Images

Evan's and Eliahna's cribs - high-tech incubators known as isolettes - were side by side from Day One.

And the babies went through so many of the same things. They had heart-valve surgery days apart. They had laser eye surgery the same day, and their retina problems were so similar, the surgeon thought they were twins.

(Not twins, betrothed!)

"They're almost like mirror images," said Houlihan, the nurse who has spent the most time caring for Eliahna.

On June 29, Evan had a minor setback. He had to go off his oxygen canula and back on the CPAP oxygen mask, which covered his face and pushed oxygen into his lungs. Karrie wrote in her journal on the Caring Bridge website: "Evan continues to grow and they try to motivate him by telling him that 'your girlfriend won't stand for a guy on the CPAP.' Even the nurses refer to them as boyfriend and girlfriend!! We are blessed to have this family in our lives as well."

The feeling was mutual. Evan had his heart surgery a few days before Eliahna. Seeing how well he did made it easier for her parents.

"It's truly amazing how God puts people in your lives at just the right time," Josh wrote on their Caring Bridge site.

Evan's and Eliahna's paths have not been identical. Eliahna moved out of the covered isolette to an open crib a few days before Evan.

"The NICU broke them up for a while," said Karrie.

"They didn't want them to get too serious, too soon," joked Andrea.

On July 5, Karrie wrote in her journal, "We know Evan is excited because his girlfriend, Eliahna, also moved and they are now in the same pod again."

About 5,000 babies are born every year at Abington, from 15 to 20 the size of Evan and Eliahna. No one in the NICU has ever seen two arrive on the same day and follow such similar paths.

Better Strategies

Babies leaving the NICU today tend to have slightly higher weights than those of 10 years ago, and the circumference of their heads tends to be a little bigger - indications that they are leaving in slightly better condition and might fare better in years to come, according to Eddie Chang, another neonatologist caring for Eliahna and Evan.

One explanation, he said, is better nutrition and a change in feeding strategies.

Babies are getting more breastmilk, first through feeding tubes and then with bottles. In addition, "we let kids eat sooner," said Chang.

He meant that doctors are more likely now to feed less through intravenous methods and more through a tube into the stomach.

There is also more physical therapy. Once Evan and Eliahna were stable, "we actually have them do gentle exercises," Chang said. The other day, for example, a therapist turned Eliahna onto her stomach and tucked her knees in, which encouraged her to lift her head.

"Stop showing off," the therapist said.

Babies also spend less time today on ventilators, and this appears to make their lungs a little stronger.

"Five to 10 years ago," Chang said, "if a baby looked like he or she wasn't breathing perfectly, there's a high likelihood that we'd actually put a breathing tube in. Now we let babies be slightly imperfect in the way they breathe. So babies will have apneas or events where they ring off, their breathing stops, their heart rate drops, their saturations drop a little bit. And that's perfectly fine, as long as they recover from it or we can make them recover from it."

 

The Cost of Caring

Neither Cleary nor Chang had any idea how much it has cost to care for Eliahna or Evan. But both believe that the better the care, the fewer setbacks a baby experiences, and the less time micro-preemies will spend in the NICU - at savings to all.

Evan and Eliahna, coincidentally but hardly surprisingly, have the same insurance coverage from Blue Cross, which is expected to pay Abington about $2,000 per day for each baby - close to $250,000 each by the time they leave.

With that reimbursement, said chief financial officer Michael Walsh, Abington will just about break even on the cost of caring for Evan and Eliahna. Every insurance company negotiates its own rate of payment with the hospital, and how any hospital performs financially depends a great deal on its payer mix. If Evan and Eliahna had no insurance and their bills were paid by Medicaid, the reimbursement would be about half, Walsh said.

 

Experiencing "Firsts"

These babies' parents experience moments most others do not.

One example: On May 28, Karrie wrote: "Without the tubing down his throat, we had another first. . . . I heard Evan cry for the first time. I waited 40 days to hear him cry and it was the sweetest sound I've heard. I'm sure as he gets bigger and his cry becomes louder I'll deny that I ever said that! Our son's strength and fight is an inspiration. We are so proud of him. He is a true warrior!"

Another, July 30, from Andrea: "I sat for a long time just watching her this afternoon while she was sleeping in my arms. She must have been dreaming of something happy because she kept smiling and making funny faces. A few weeks ago I could barely see Eliahna's face with all her breathing tubes and now all she has is clear canula tubes and I can see her face so clearly. I love looking at her rosy, chubby little cheeks and am grateful and awe-inspired of how far she has come. I can literally sit there for hours just staring at her and loving her."

Both mothers are beginning to fret as the day of discharge approaches.

They know their favorite nurses can't go with them. There will be no heart, respiratory, and blood-oxygen-level monitors at home.

But for all four parents, their sense of relief, gratitude, and joy can't be overstated.

Once they leave the hospital, Evan and Eliahna won't see each other for a while. Each must stay close to home.

So the Silvas and the Obert-Thorns went out to dinner Saturday night to celebrate the end of their long journey together.

And to plan the wedding.

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