A Warrior's Story
When Tara Webb learned in the summer of 2012 she was pregnant, the 35-year old mother of three was overjoyed. Her husband, Chris, was equally thrilled, and the couple began planning for the newest addition to their young family.
It was going to be a boy. They named him Johnny. What happened next plunged them into a heart-breaking saga that would test Tara’s fortitude, that of her unborn child, and the couple’s ability to cope with an unimaginable situation. It also brought them to the Good Shepherd Rehabilitation Hospital Pediatric Unit in Bethlehem where love and clinical expertise helped both mother and child heal.
Tara was 20 weeks into a normal 39- to 40-week pregnancy, when she began losing large amounts of amniotic fluid so essential to sustaining her baby’s life. In a panic, Chris rushed her to the hospital where she was admitted. “Basically, there was nothing they could do,” says Tara. “The put me on some antibiotics and told me to, ‘Cross your fingers, cross your legs and pray that nothing happens.”
After 48 hours, Tara and the baby were stable enough to be discharged. Outside, Hurricane Sandy was wreaking havoc. Tara arrived to a house without electricity. Chris rigged up a generator to provide a minimum of power but as a police officer for the City of Easton working the night shift and a full-time college student, he couldn’t stay home as much as he would have liked.
“I’m at home, on bed rest with three kids, trying to hold down the fort,” says Tara. “I felt like I was held hostage. I was afraid to move and lose more fluid so I took a shower once a week and had to eat lying down.”
Every day that Johnny remained alive and inside Tara was a victory. Tara was petrified she’d lose the baby. But Johnny wasn’t giving up without a fight. “When Johnny started kicking, I started sobbing and crying,” says Tara. “It was like he was saying, ‘Don’t worry mom. I got this.’”
At about 26 weeks, Tara lost even more amniotic fluid. She was rushed back to St. Luke’s Hospital in Bethlehem and admitted on December 6. She managed to hold on to Johnny for another few days until suddenly Johnny’s heart rate plummeted and it became apparent that he was in distress. “I knew it was time,” says Tara. “I pretty much had no fluid at this point.”
Johnny was delivered by cesarean section on December 11, 2012. Even then, his warrior’s spirit was showing. “He wrapped himself around his umbilical cord and he wouldn’t let go,” says Tara.
Johnny had made it to a critical 27 weeks, increasing his chance of survival. But at 1 pound, 11 ounces and 13 inches long, Johnny’s fight in the neonatal intensive care unit (NICU) at St. Luke’s was just beginning; and so was his mother’s. Johnny was so medically fragile, neither Tara nor Chris could hold him for the first week and a half of his life. Emotionally, Tara was afraid to get too attached to this tiny creature that fit in both her cupped hands.
Johnny’s paper-thin skin was so transparent his veins and tiny ribs were visible. His coloration was abnormally red and a fine coating of blond hair covered his body. Technology, along with exceptional nursing care, was keeping Johnny alive. He required a feeding tube and help breathing with continuous positive airway pressure known as CPAP, a treatment that uses mild air pressure to keep the airways open. “I didn’t understand how a baby like that could live outside the womb,” says Tara. “And I was afraid to love him because I thought I might lose him. When he was in my stomach, we were a team. When he was taken out, I felt lost. Nothing prepared me for seeing him for the first time. The way I handled it…I just never imagined Johnny coming home. In my mind, he was almost a NICU baby, not my baby.”
Adds Chris, “I think Tara fought more for him when he was inside her. But I felt like I could do more for him when he was out.”
Johnny was kept in the NICU for five months. Still small and under-developed, using every ounce of his strength just to breathe, Johnny made it through this crucial stage of his life. Now he needed specialized rehabilitation.
Tara and Chris were given the choice of sending Johnny to Hershey Medical Center or to The Children’s Hospital of Philadelphia. A NICU nurse recommended the Good Shepherd Rehabilitation Hospital Pediatric Unit which neither Tara nor Chris had
heard of. The Webbs decided to check out Good Shepherd before making a final decision. It was much closer to home, making it easier to juggle the needs of their other three children ages one, two and nine, but would it be the best place for baby Johnny?
“I wanted to know that he was going to be in a place that was happy and caring, a family atmosphere and not a sterile atmosphere,” says Tara. “I loved it to pieces. But what sold me was at the end of the tour when Jennifer (Gossler, R.N.) asked to see a picture of Johnny. I was really excited at that point and Johnny was transferred less than one week later.”
Johnny’s weight had increased to 10 pounds when he arrived at Good Shepherd on May 6, 2013, but he remained medically fragile.
“His lungs still required oxygen, he required a number of medications and he was barely doing anything we’d expect for a baby his age,” says Rosauro Dalope, M.D., interim medical director of the pediatric unit who oversaw Johnny’s case.
Now it was time for Johnny to show what he was made of. “We wanted him to be challenged and pushed,” says Chris.
And he was. Johnny was given three hours of physical, occupational, recreational, and feeding therapy every day. Chris and Tara dubbed it “Baby Boot Camp,” a fitting name given Chris’s background as a Marine.
Within two weeks, Johnny was making great progress. “We saw a different, healthier baby. He was happy, he was smiling, he was interactive, he was chubbier,” says Tara.
Adds Chris, “He went from zero to 100 with all the stuff they were doing.”
Kimberly Kuchinski, M.D., program director, pediatric physical medicine rehabilitation, heralds Good Shepherd’s integrated team approach as pivotal to Johnny’s success. “All of our nurses, our therapists, our respiratory staff, our dietitians, and our doctors worked closely together to figure out what was the best way to handle Johnny and honor his medical needs to help him succeed and thrive and reach all our rehabilitation goals,” says Dr. Kuchinski.
But Johnny wasn’t the only one who needed tender loving care. Tara was broken too in heart and spirit. The Good Shepherd staff responded and spent hours talking with her, listening to her and coaching her in how to care for her baby.
“Good Shepherd healed me just as much as they healed Johnny,” says Tara. “It wasn’t until I got to Good Shepherd that I learned to love him for everything he is and everything he isn’t. I honestly don’t know what was the bigger miracle, how they changed Johnny or how they changed me.”
Chris is deeply grateful for the added dimension of care. “I can’t ever thank them enough for what they did for my son and my wife,” he says. “They helped them beyond belief, not just in a medical sense with Johnny but in a personal growth sense with Tara. I’ll be eternally grateful for what they did.”
After five months at Good Shepherd, Johnny went home weighing 14 pounds, 4 ounces. He’s since put on more weight and clocks in at 19 pounds, 3 ounces. He’s starting to talk, walk and can feed himself. Johnny also only needs two breathing treatments a day and all his other medications have been stopped. Tara and Chris were taught by the pediatric therapy team how to set goals at home and work every day towards achieving those goals. Tara documents Johnny’s progress and vigorously stays on track with daily physical and speech therapy exercises.
“Without the education I received from Good Shepherd, I never would have been able to provide what Johnny needed once he got home,” says Tara. “I can’t imagine having sent Johnny any place else. Good Shepherd made all the difference in our little boy’s life, and our family’s too.”