Karen and Norm Johns panicked when they realized their 2-day-old infant needed to be transported from Central DuPage Hospital in Winfield to the neonatal intensive care unit at Christ Hospital and Medical Center in Oak Lawn.
The doctors didn’t have to spell it out for the Bloomingdale couple. Despite a normal pregnancy and labor, baby Jordan was suddenly in a fight for his life. His parents were terrified.
But at Christ Hospital’s neonatal intensive care unit, there was no time for panic. As they do every day, Christ Hospital’s doctors and nurses rallied around the infant, beginning yet another attempt to save a baby’s life.
Christ Hospital has one of the most sophisticated neonatal intensive care units–or special-care nurseries–in the Chicago area. It is the only hospital in the south suburbs to carry a Level 3 designation from the state, which means it can accept hospital transfers of infants with the most severe and life-threatening ailments. Last year about 200 babies were transported to Christ from hospitals across the state.
That designation can be a blessing and a burden. Although medical technology has advanced in the last decade, special-care nursery staffers see some of the most challenging cases in the Chicago area. Scores of babies endure and go on to lead normal lives, but there are always the exceptions, and those can be especially difficult to accept.
The Jordan Johns case was a tough one to call from the start. Although most babies in the unit are premature, Jordan was a full-term infant who seemed perfectly normal at birth. He grunted a bit in breathing during his first hours at Central DuPage Hospital on the morning of Oct. 25, but doctors told the Johnses not to be concerned. Eight hours later, after Karen Johns had held her son in her arms only once, doctors put him under an oxygen hood. The labored breathing continued, and Jordan’s right lung collapsed. On Oct. 26, the hospital staff decided Jordan needed special care. He was immediately taken to Christ Hospital.
Jordan’s journey had begun.
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Journeys such as Jordan’s are part of the daily routine in a neonatal intensive care unit, where the tiny bodies inside are literally on the cusp of life.
In recent years, though, the odds have turned in the babies’ favor. Better prenatal care, improved technology and new drugs such as surfactant, which facilitates breathing in preemies with undeveloped lungs, are among the major reasons for the growing number of success stories, says Dr. Arvind Shukla, Christ Hospital’s director of clinical neonatology.
Just 10 years ago, premature babies born in the 28th week of pregnancy had little or no chance of survival, Shukla says. Today most of those babies pull through, as do a growing number of 24-week babies.
Nationally, the infant mortality rate has gradually declined. In 1980, 12.6 of every 1,000 babies died in their first year. By 1992 that number was 8.5 deaths per 1,000 babies. Of the 553 babies treated in Christ Hospital’s special-care nursery in 1995, 95 percent survived.
Among the success stories are the children of Frank and Leslie Levanovic of Chicago’s Beverly neighborhood. On Oct. 26, they brought home baby Lauren and her twin sister, Caroline. Lauren was 2 pounds, 11 ounces at birth, compared with her sister’s weight of 4 pounds, 8 ounces. When she left the hospital 10 days later with her sister, she was only 3 pounds, small enough to fit inside a man’s tube sock and the smallest infant the hospital ever released, Shukla said.
As far as the Levanovics were concerned, Christ Hospital handed them two miniature miracles. Leslie Levanovic suffered twin-to-twin transfusion syndrome, a disease of the placenta that caused Caroline to get most of her mother’s nutrients. Before the babies were born, Leslie learned that the chance of both babies surviving was just 20 percent.
There also was a possibility that at least one of the infants would be mentally retarded.
But after 14 days in the special-care nursery, the babies were home and thriving. By early January, Lauren weighed more than 7 pounds, Caroline 9 pounds, and there were no signs of abnormalities.
“We got outstanding care. I get emotional just talking about it,” said Leslie. “It was hard leaving the hospital with my girls (still there), but I knew with all those nurses there, they’d be just fine. They were just so loving.”
Lisa Torres of Oak Lawn went through a similarly challenging pregnancy and also counts herself among the blessed. She and her husband, Raul, tried for five years to have a baby before an in-vitro procedure produced triplets. On Dec. 3, Lisa went through premature labor at 29 weeks, fearful that one or all of her babies might die. But all three babies–Andre Christian, Julianna Elizabeth and Nina Alicia–are doing fine. Andre and Nina were sent home in early January, and Julianna, the smallest, was expected to be home soon.
“The care has been excellent here,” Lisa said, cradling the babies in her arms at the special-care nursery. “They’re so professional, yet their kind hearts have really comforted us.”
Judy Vella, a 12-year veteran of the special-care nursery who was with the Torres triplets, said it has been amazing to watch how medical advancements have helped save so many more lives in her tenure at the hospital.
“Technology has changed such that we really can help them better than we could before,” she said. “And 12 years is such a short time really to see things change that rapidly for the betterment of the babies.”
Yet for all of the heartwarming endings like that of the Levanovics and the Torreses, the staff gets its share of heartbreakers. Low-birth-weight and premature babies regularly leave the special-care nursery facing a range of long-term health problems. Many later suffer from learning disabilities, visual and hearing problems, mental retardation and a variety of other disorders.
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In the Jordan Johns case, there was hope from the beginning that he might not suffer any long-term problems because he was a full-term infant weighing 7 pounds, 9 1/2 ounces at birth. But Jordan presented plenty of thorny issues medically and emotionally that kept the staff hopping from the moment he arrived. His case demonstrates the lengths to which a neonatal intensive care unit will go to keep a baby alive.
Jordan’s initial sickness was a mystery. Doctors at Central DuPage Hospital couldn’t explain why a full-term, rosy-cheeked boy suddenly could have so much trouble breathing.
Christ Hospital doctors first put Jordan on a jet ventilator to help his labored breathing. When that didn’t work, they tried a nitric oxide treatment to strengthen the lungs, but again Jordan didn’t respond. Doctors then decided to try what’s normally considered a last option: the extracorporeal membrane oxygenation (ECMO) machine. Because doctors have to insert a catheter to connect to the baby’s heart to use ECMO, the procedure is more invasive and therefore riskier. Still, in Jordan’s situation it seemed to be the best option, said Dr. Manohar Rathi, director of perinatal medicine.
“The baby’s lungs were not properly developed,” Rathi said. “He never had a good exchange of oxygen.”
The ECMO machine pumps oxygen inside a baby to strengthen the heart and lungs in the hope that eventually the infant will be strong enough to survive on his or her own. Normally, babies stay on the machines no longer than 10 or 15 days for fear that too much time on the machine could produce undue stress on the heart and lungs, damaging them. The worry is always that babies might die on the machine if kept on too long, Rathi said.
When doctors first placed Jordan on ECMO, they were hopeful that he would soon recover. Yet Jordan’s case proved to be even more complex and troubling than they could have anticipated.
After two weeks, doctors tried to take Jordan off ECMO, but his chest was too full of fluid. Doctors had no other choice but to keep him on ECMO because they knew Jordan couldn’t breathe on his own, Rathi said.
That first failed attempt was heartbreaking for many of the nurses in the unit. Although they generally try not to get too attached to babies under their care, Jordan’s case was different. He was a full-term baby with so much potential for a complete recovery. Because of his complications, a team of nurses, doctors and respiratory therapists was assigned to work with him alone and, by doing so, the hospital employees became more attached to baby and parents than they usually do.
Before long, Karen and Norm Johns became fixtures in the special-care nursery. Karen would arrive after 10 a.m. and take her place either outside the glass observation window or at Jordan’s bedside, holding his hand. She would leave in late afternoon to be with her other child, 2-year-old Taylor, to be replaced by Norm sometime after 8 p.m., after he got off work. Their routine went on without fail.
Staff nurse Cindy Prorak felt deeply for Karen Johns as she watched the mother travel extreme ranges of emotion in response to Jordan’s daily ups and downs. Even through her tears, Karen would take the time to thank the nurses and pat them on the back. Her strength and optimism were infectious.
“I’ve never seen a parent will a baby to do better as well as these parents,” Prorak said one morning as she watched Karen hovering over the baby’s bed. “He’s got a lot of people pulling for him.”
Prorak was so impressed with Karen that she bought her angel earrings to match her own. Afterward, other nurses and therapists attached pictures of angels and tiny angel figurines to Jordan’s bedside. They were Jordan’s “guardian angels.”
“I try not to get attached because the emotional toll is really difficult,” said nurse Dawn Murphy, “but these parents are incredible.”
With the nurses, doctors and his parents cheering him on, the battle to save Jordan Johns continued. Seven days after the first attempt–20 days after Jordan was first put on ECMO and 25 days after he arrived at Christ–doctors tried to take him off again. But again there were complications, and doctors worried that Jordan couldn’t make it on his own. He stayed on ECMO.
“Jordan failed terribly,” Karen wrote in her journal after they tried to take him off the machine. “His abdomen got very big, and they had no idea why. . . . Even though no one said anything directly, I know that many felt that Jordan would not recover from that failure.”
After a series of scares during the next several weeks, Jordan seemed to be improving. Nurses and doctors were cautiously optimistic that he would pull through. It was a difficult time, though, because no baby at Christ had ever been on ECMO as long as Jordan. There was always the fear that he would die while on the machine. But at the same time, doctors felt his lungs still weren’t strong enough to do the work alone, Rathi said.
By this time, the nurses were completely attached to Jordan. In the weeks before Christmas, their hopes seemed to heighten.
“There was this little thing in each of us that was holding out for a Christmas miracle,” Murphy said.
On Dec. 19, doctors began the process of taking Jordan off ECMO. By now, Jordan had been on the machine for 45 days. Doctors held their breaths, and Jordan pulled through. With the aid of a ventilator, he was breathing on his own.
In the days before Christmas, much of the nursing staff felt more confident than ever. “Everybody has had their doubts that he’d do OK, but I think he will now,” Prorak said on Dec. 23.
But it was not to be. On the afternoon of Christmas Eve, Jordan Johns’ little heart failed. Jordan would not be among the babies saved by a combination of technology and tender loving care. For the nursing staff in particular, his death underscores how frail life can be in the special-care unit.
“It was a shock to us,” nurse Julie Gleeson said. “Usually we’re prepared, but with the other ones, it’s a blessing; it’s their time and oftentimes they need to go. But in Jordan’s case, it was different. The fact that he made it off ECMO–and I honestly didn’t think he would–that sparked everybody’s hope.”
Murphy got the news at home on Christmas morning, just hours after opening a Christmas ornament from Jordan. She was so devastated by the news that she joined several other nurses at Jordan’s funeral service. In six years at the hospital, she had never before attended a patient’s funeral.
As difficult as Jordan’s still-unexplainable death was for the nurses and his family, many have found meaning in his short life. Nurses say working on his team made them closer than they’ve ever been before. Many said they learned a lot about devotion and love from watching Karen and Norm in their treatment of the baby as well as the staff.
Although a case such as Jordan’s is especially hard for any hospital staffer to endure, Rathi says it underscores the reality of their work. No matter how advanced the technology, not all babies beat the odds. No matter how hard, the staff has to accept that fact.
“Of course we thought there was some chance,” he said. “After all, science has put us in this place where we can do so much more. Yet certainly we could not pull all the miracles.”
Even when a baby doesn’t make it, parents like Karen Johns can still appreciate how much the hospital staff was willing to do to help. Nurses called and came in on their days off to comfort her and Norm, and she’ll never forget that.
“The nurses and respiratory therapists were so caring, not only for Jordan but for us,” she said. “Jordan touched more lives in 61 days than many people do in a lifetime. He’s our guardian angel now.”
