A League of His Own
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Jade Szukics remembers hearing her baby’s first cry. But the moment every mother dreams of, that exquisite moment of holding her newborn as he took his first breath was denied her. Instead, Lewy, who was born by emergency C-section on January 11, 2017, was whisked away to the neonatal intensive care unit where he was put on a ventilator and placed in an incubator.
Lewy Schoenberger’s pre-term delivery at 30 weeks and five days was due to a slower than normal growth rate putting him at risk. The tiny baby boy weighing just two pounds and 5.4 ounces, and measuring a little over 14 inches long, struggled to breathe as Jade lay in the recovery room for what seemed an eternity. A first-time mother, Jade learned from Lewy’s father, Russell Schoenberger, and her parents that Lewy, unable to breathe on his own, was in the neonatal intensive care unit on a ventilator.
“I remember finally being able to see him,” says Jade. “It wasn’t until a couple of hours later that the neonatologist came in and said how bad Lewy really was, and that he had taken a turn for the worse.” Lewy’s arterial blood gases, a measure of whether the lungs are providing adequate oxygen as they remove carbon dioxide, were “pretty much incompatible with life,” says Jade.
Lewy made it through those first critical hours but his survival was anything but certain. “Within 48 hours we were told three times he wasn’t going to make it,” says Jade. “They asked us if we wanted him baptized. We said yes. After that we literally were counting down the minutes and seconds on the clock.”
By Lewy’s second week of life, his blood gases were stabilizing. But just as the couple’s hopes were buoyed by this encouraging news, a neonatologist told them that Lewy had suffered two brain bleeds at the most serious level. Jade and Russell were cautioned that Lewy might never, walk, talk, speak, or know his parents. “She (the neonatologist) pretty much told us that we had options,” says Jade, “meaning if we wanted to just drop care we could.”
That night, Jade and Russell met with their parents to wrestle with an awful decision. They wanted to give Lewy a chance but also didn’t want him to suffer. Would they ever be able to bring their baby home or would they be planning his burial? The couple began researching stories on the internet about other babies that suffered brain bleeds. In those stories they found hope from other parents who didn’t give up on their children. “That’s pretty much when our attitude changed,” says Jade. Lewy had come this far; the fighter in him deserved another chance.
Yet another life-threatening medical obstacle loomed; as a result of the brain bleeds, Lewy developed hydrocephalus, a buildup of cerebrospinal fluid in the ventricles of the brain. “Every single day they had to get measurements of his head to see how much it grew,” says Jade. Lewy’s condition became critical. On February 14 a shunt was surgically placed to drain the excess fluid and relieve the pressure in his skull.
Lewy’s head quickly began reducing in size. With that crisis past, focus again shifted to increasing Lewy’s pulmonary strength. A round of steroids helped and Lewy was taken off the ventilator which until then had been doing much of his breathing for him. Ten days later though, Lewy’s progress took a nosedive and he was back on the high frequency ventilator.
After conferring with the doctors, Jade and Russell agreed with the doctors that since Lewy was so dependent on the ventilator he would benefit from a tracheostomy, a tube surgically inserted in his windpipe and connected to the ventilator. “That was kind of like a curveball that crushed us because we never thought he’d be back on that ventilator,” says Jade. “We had to wrap our brain around that.”
Lewy was one tough little boy though, and after another round of steroids he transitioned to a less aggressive ventilator. Ultimately, the goal was to get Lewy strong enough to breathe on his own. For that to happen though, Lewy needed therapy and lots of it.
On August 1, Lewy was transferred to the Good Shepherd Rehabilitation Hospital Emily Howatt Pliskatt Pediatric Unit in Bethlehem. Within 48 hours, Lewy began a daily regimen of physical, occupational, speech, and pulmonary therapies. Jade told his therapists, “Lewy’s in a league all his own. He’ll teach you things you never saw before.”
Jade’s words were on target. Lewy turned out to be one of the most difficult babies with stiffened premature lungs the Good Shepherd pediatric team had seen. “With Lewy, we knew we had our work cut out for us,” says Sheri Luther, respiratory therapist, “because they had a hard time transitioning him from the hospital ventilator to the home-care vent he would need in order for him to come to rehab.”
Lewy challenged the pediatric team from the beginning by turning blue from five to 10 times a day, says Sheri. These episodes were triggered when therapists tried getting Lewy to do something he didn’t want to do. “He would hold his breath, clamping down his airway and blocking the vent from doing its job, decreasing the oxygen in his blood and turning blue,” says Sheri.
When this happened all therapy came to a halt slowing down the recovery process, says Sheri. The team also was careful not to push Lewy too much or run the risk of him breathing too rapidly and burning vital calories he needed to get through his daily therapies. “It was a delicate circle that we had to watch very closely,” says Sheri.
As Lewy’s physical therapist, Erica Herzer focused on building Lewy’s strength. “When Lewy came to Good Shepherd, our first goal was for him to be able to tolerate being in positions other than lying on his back without distress,” says Erica. “By the time he left he was smiling, starting to roll by himself and sat up with minimal assistance while playing with toys.”
On December 11, 2017, Lewy went home to his parents’ cozy home in Lehighton for the first time since he was born. He had successfully been weaned from the ventilator circuit with its complicated air flow settings to one that Jade and Russell could better manage themselves. Now a little over a year-and-a-half old, Lewy has blossomed into a chubby-cheeked, happy baby who loves to laugh, play in his bouncy chair and be smothered in kisses by his parents. Perhaps best of all, Lewy no longer needs to be on the ventilator during the day and is slowly being weaned from it at night.
Russell marvels at his son’s miraculous outcome and has discovered that teachers and heroes can come in very small sizes. “He definitely taught us the value of life and the will to survive,” says Russell. “He’s definitely a fighter. I actually learned a lot from him and look up to him for that because I think I would have given up with everything he’s been through.”