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Fighting Pediatric Disease: Not Just Kid Stuff
A Mother Copes with Her Baby's Crisis, Then Her Own
Julie Johnson had no reason to think her newborn son wasn’t healthy. Weighing in at 5-and-a-half pounds, Brady looked just as robust as her other two children had at birth. He’d turned a little yellow about 18 hours postpartum, but doctors sent him home, hopeful the jaundice would disappear, as it often does in newborns.
It didn’t. In fact, every time Brady’s blood levels were checked, his bilirubin—the yellowish pigment from broken-down red blood cells—rose, indicating a liver disturbance. At the Fairfax, Va. hospital where he was born, Brady was tested for biliary atresia, the congenital absence or closure of the ducts that drain bile from the liver. The results were negative. One thing was clear: Brady was born with a liver that wasn’t working.
Two weeks later, Brady hadn’t gained an ounce. On readmission, his white count soared to an alarming number. His liver had completely shut down; his only hope for survival, the Johnsons were told, was a liver transplant.
On May 13, 2004, at age 15 days, Brady was flown to Hopkins and listed for transplant as a “status 1.” Only those likely to die within days are given that distinction.
Julie Johnson’s first response was disbelief. “I felt like they were talking to someone else. You just never think something like this can happen to you.” Little did she realize her own health was about to collapse. Her two other children, Brooke, then 4, and Brett, then 2, shook her back to reality. And husband Eric, as well as family and friends, would provide physical and emotional support throughout the ordeal.
At 2 a.m. on May 22, as the family grabbed some sleep in the pediatric waiting room, a nurse awakened Julie with news: A liver had just become available. Pediatric surgeon Henry Lau was about to perform a liver transplant on the smallest patient ever to undergo the procedure at Hopkins. Only one other hospital in the country had transplanted a liver in a child under 6 lbs. “It doesn’t get any bigger than this,” the anesthesiologist told the Johnsons.
Time passed slowly. Every hour, a nurse would report, “He’s not out of the woods yet.” Finally, Lau came out to tell them Brady had pulled through.
The transformation was undeniable. Brady’s skin had morphed from bright yellow to rosy pink. “It looked like he’d had an oil change, with a brand new filter,” recalls Eric. The family’s joy was tinged with sadness when they thought about the donor’s family. Still, Julie was elated that the transplant was successful.
But the euphoria was short lived. Upon returning home, the enormity of managing Brady’s care plus two other children hit Julie like a sledgehammer. Brady thrived, but he was hooked up to a heart monitor and feeding tube. He also needed about 14 medications daily. Julie began to unravel. She was plagued with doubts: “How can I possibly ensure his survival?” Will we ever be a normal family?”
Severe postpartum depression and post-traumatic stress had consumed her, explains pediatric transplant coordinator Carly Bhave. Bhave spoke to Julie often during that time to help her manage the baby’s medications. It took Julie an hour every morning and evening just to lay out the drugs. Her biggest fear was that when Brady spit up, the meds would be ineffective. Bhave reassured her that as long as he took the immunosuppressant first and kept it down for 15 minutes, he’d be fine.
Eventually, through professional counseling, medication, family and friends, and simply falling into a routine, Julie overcame her depression. “I realized it was his life, not mine I had to focus on. I was responsible for teaching him that his body is special in some ways but that he’s a normal child. And I couldn’t treat him like a normal child if I was always worried about him,” Julie says.
Today, at 18 months, Brady Johnson is as rambunctious as any healthy toddler. One would never guess he has a chronic illness. Taking meds daily is as natural to him as playing with toy cars.
Meanwhile, motivated in part by her experiences with Brady, Julie plans to go back to school to become a nurse. She won’t soon forget the pivotal role Hopkins ICU nurses and transplant coordinators played in helping the family to adjust to their new circumstances. Brady’s liver transplant, observes Julie, proved much more than a physical triumph for him. “It made us all stronger.”