Little Girl, Get Up

After dinner, Abby was cleaning the kitchen while Leah and Serena went into the basement. “I told them to jump around and have fun. I encourage that.” She would tell them to be rambunctious. Leah called upstairs to tell Abby that her back hurt. Abby told her to come upstairs, sit down, and read a book. After a few minutes, Leah said her hand felt tingly, and then the tingles spread up her arms. Abby told her to go to the first-floor guest room and lie down. But when Leah tried to stand up from the living room sofa, she collapsed. “‘Mom, I can’t walk,’ she said. I went from not too worried to ‘Whoa. This is a pretty big deal,’” Abby remembered. She called Donna, who remembered, “I received a phone call from my strong, not easily flustered daughter Abby, saying Leah had a bad pain in her neck, and her arms and legs felt very weak.” Donna’s worst fears were that Leah might possibly have meningitis or encephalitis. She encouraged Abby to take her immediately to the emergency room. Donna called Peter, who was with the boys at church, told him what Abby had said, and insisted he should talk to Abby and convince her to take Leah to the ER. This did not sit well with Leah, who remembered, “I bawled my eyes out. I didn’t want to go to the hospital.” Donna and Peter agreed that Abby should call an ambulance to take Leah to the ER. “I knew we’d get there a lot quicker if I could drive,” said Abby. Leah was deadweight as her mother carried her to her van. (What four-year-old Serena recalled of the drive to Morristown Medical Center was that Leah was laid across the middle seat of the van and did not wear a seat belt, violating a strict family rule.) Peter met them outside the ER and carried Leah inside. It was flu season, and the ER was crowded with kids. “In the back of my head, I’m thinking, She has some kind of odd flu virus, and we’ll check this out,” said Abby. “I hope this doesn’t become a thing. This better be quick.” Leah remembered being in the ER for more than two hours before she was seen by a doctor. “My mom kept going to the [check-in] window—the poor woman behind the window—and being very pushy. ‘Let’s move this along.’” Eventually, Leah was given a CT scan and x-rays, and doctors were stumped, unable to explain the paralysis. At about three o’clock in the morning, Peter left the hospital to go to the house in Long Hill where Abby’s sister Carrie was watching the other three kids. “Leah was kind of OK when I left,” said Peter. Abby and Leah remained in the ER, and for several hours, the two of them slept together in a bed in the hallway outside the ER. Abby recalled, “We woke up at about six thirty, and I said, ‘Good morning, honey. How are you doing?’ She said it was very stuffy. I fanned her off, hoping it would revive her a bit. Then she said, ‘Mom, I can’t breathe.’ “I found a nurse—and bless that lady, whoever she is—and told her my daughter couldn’t breathe,” said Abby. She then would then watch helplessly in the hallway as a team of doctors, nurses, and respiratory therapists took over. Abby said, “Anybody you can imagine came and helped out and brought her back to life, because at that point she didn’t have oxygen. We knew whatever had happened to her had progressed so far that her lungs were not working anymore. So she was intubated and completely sedated. She was a quadriplegic, and she was on a respirator. That was the lowest point.” According to Julie Connelly, a respiratory therapist, was Leah could no longer move her diaphragm, the muscles that control movement of the lungs. They were shutting down as the paralysis was progressing. Julie explained how the procedure to intubate involved moving the tongue out of the way and inserting a breathing tube between her vocal cords. Julie had arrived at the hospital that morning just before seven o’clock to begin her shift in the pediatric intensive care unit (PICU) when a therapist came up from the ER looking for a device that measures the depth of a breath. “I had a sense it wasn’t good,” said Julie, who brought the device with her to the ER and became part of the team that would work on Leah. “From the tests they asked me to perform, she was not able to generate anything. I knew right off the bat this was serious. It was only a matter of time before Leah probably would have stopped breathing completely. She was working really, really hard, like her whole body was lifting as she was trying to get some air. That’s when we intubated her and put her on the ventilator.” Abby was aware of the severity of the situation, that Leah’s life was now in the balance. She carefully texted Peter. “I thought, I can’t call to say, ‘I’m afraid Leah is going to die, and you have to come to the hospital right away,’ because how can you tell someone to drive ten miles after hearing that news? So I just texted him, ‘You might want to hurry up; please come to the hospital.’” Peter got there as quickly as he could and saw Leah. “She certainly wasn’t the girl we knew twenty-four hours ago. She wasn’t even the girl I said goodbye to a few hours ago,” he remembered. “She’s completely sedated; she’s unconscious. She’s got tubes in her nose, tubes in her arms. I came back [to the Morristown hospital], and it’s as if she’s gone. In twenty-four hours, she went from playing softball and running around to being quadriplegic. You saw everything you thought you’d do with your kids—the vacations, the sports, everything a normal family thinks of—is gone.”