A Schaumburg nurse was catatonic for months. Then her doctors found a way to wake her up.
April Kay Braker vanished for more than a year. No one could be certain she would return as the same person, or whether she'd come back at all.
"The last thing I remember, I was still working at Alexian Brothers," the 31-year-old Schaumburg registered nurse says. She doesn't remember leaving the Alexian Brothers Medical Center in Elk Grove Village for a new job in the emergency room at Rush Medical Center in Chicago in spring 2018. She doesn't remember a vacation to see girlfriends on the West Coast. She doesn't remember the onset of erratic behavior and paranoia that left her raving at her deeply concerned husband, Paul, accusing him of trying to kill her.
She doesn't remember going to the ER on May 6, 2018, or the following day, when doctors inserted a breathing tube to save her life.
The once-vivacious wife, who loved her dog, Moses, and enjoyed hiking adventures around the globe with her husband, was catatonic. Diagnosed with refractory anti-NMDA receptor encephalitis, a rare disease that causes a body's immune system to attack the brain and often is misdiagnosed as a mental illness, she was unresponsive for more than five months.
"The word bleak had been used a couple of times," remembers Paul, 37. "I was being prepared for a very hard, long-term, lifelong problem."
But he kept the faith.
"She's there. She's dancing in the dark," Paul would say, as he slept next to her hospital bed most nights and eventually quit his job and moved in with his parents so he could spend all his time at her side. "But I wasn't sure she'd every wake up again."
The disease, which was first described in 2007, has no FDA-approved treatments, as there aren't enough patients to study it effectively. So Dr. Stephen VanHaerents, a neurologist at Northwestern Memorial Hospital, had to build a treatment plan with the available literature.
"As her case was so severe, you rely a lot on case reports and expert opinion, and that's what we did," VanHaerents says. "And it worked."
April remained comatose after doctors removed an ovarian tumor, treated her with steroids and intravenous immunoglobulin, removed her plasma and treated it before returning it to her blood, and gave her several chemotherapy drugs used to treat cancers.
"We were very aggressive. But you want to be because the longer people stay in a coma state, things go wrong," VanHaerents says. "We went outside the box of what a lot people tried, and it was helpful."
April started to wake up after her medical team gave her bortezomib, a drug used to treat multiple myeloma, a cancer that forms in plasma.
"When I starting waking up, I wasn't quite with it," April says. She was agitated, even combative, trying to rip out her breathing and feeding tubes.
"Even when she was waking up, it's hard to see a person in that state, fighting for her life," Paul says. "Luckily, she doesn't remember the catatonic period or even the rehab."
The couple, married for nine years, laugh and smile now as they tell their story sitting in the home of Paul's parents, Bruce and Kathleen Braker, where they have lived in the basement since April was discharged. Paul has gone back to work as a licensed mortgage broker. April has returned to grad school at Olivet Nazarene University, where she's acing tests and papers as she moves toward earning her master's degree in May on her way to becoming a nurse practitioner.
"A lot of that is her and how motivated she is. She's tough," VanHaerents says, chuckling as he adds, "Not everyone in a coma goes to grad school within a year. She's doing well in a master's degree program."
In addition to the positive effects from bortezomib, April benefited from electroconvulsive therapy, administered under the guidance of Dr. Lisa J. Rosenthal, chief of psychosomatic medicine for Northwestern Medicine.
"People are going to get freaked out about it," April says, explaining how electricity jolted into her brain through contacts on her temples.
"I got freaked out about it," Paul admits. "But every time she did it, she came back in the room with more clarity, better dexterity, more put together, more alive."
Three days a week for 10 sessions, April underwent electroconvulsive therapy. She went from ICU to the RML Specialty Hospital in Hinsdale, where she was weaned from the ventilator. She received occupational, physical and speech therapy at Marianjoy Rehabilitation Hospital in Wheaton and at the Shirley Ryan AbilityLab in Chicago. April had to relearn how to talk, how to walk, how to eat, how to breathe. Her father-in-law took her to the Sears Centre parking lot in Hoffman Estates so she could relearn how to drive and get her license back.
"Her recovery was in large part the strong collaboration and hard work of neurologists, pharmacists, nurses, physical therapists, neuropsychologists, immunologists, psychiatrists, and advanced practice providers who all played a role in her care," says VanHaerents, who is preparing to publish a paper about April's case. "It truly was a team effort. There were so many people who contributed to her care, and whom she met along the way. She continues to be an inspiration to her care team and for patients with this disease and their families."
Earlier this month, April told her story at the Feinberg Medical School in Chicago as part of a lecture series on rare diseases, sponsored by the Harmony 4 Hope charity of Lake Zurich.
"She is such a hard worker and so determined to get back to 100 percent," VanHaerents says.
"I still struggle, especially with midterms and finals," says April, who still receives speech therapy but is confident she'll recover fully. "I'm probably one of the most focused people you'll meet."
She and her husband talk about how her bout with refractory anti-NMDA receptor encephalitis now seems "surreal," almost like a dream. But Paul says he had faith the wife he loves would come back to him. While April says she can't remember more than a year of her life, one memory stayed with her the whole time.
Gazing at her husband, April says, "I won't forget him."
• You can read Burt Constable's July 8, 2018, column about April's early symptoms; how friends, relatives and doctors shared information, leading to a diagnosis; and how specialists were then working to wake her at dailyherald.com.