Amelia Dass moved to New York City from Perth, Australia, in 2015 at age 26 and was enjoying a promising career as an architect when she developed unrelenting seizures. She was referred to The Mount Sinai Hospital, where she was put under the care of a skilled team of epilepsy specialists, including Madeline Fields, MD; Lara Marcuse, MD; Ji Yeoun Yoo, MD; and Nathalie Jette, MD. Diagnosed with new onset refractory status epilepticus (NORSE), Amy spent three months in the Mount Sinai Neurosciences Intensive Care Unit, two of those in a coma.
According to Dr. Yoo, NORSE is a life-threatening condition in which a healthy person with no history of seizures begins having them, and within days the activity progresses to status epilepticus (SE). SE is a state in which a person has one prolonged seizure or a cluster of seizures without recovery time in between.
Amy was given numerous anti-seizure medications, steroids and other immune therapies, as well as placed on the ketogenic diet to control the seizures. However, this did not result in a total cessation of her seizures. She then underwent a procedure called vagus nerve stimulation, which prevents seizures by sending regular, mild pulses of electrical energy to the brain. Amelia’s seizures finally stopped, and she was on the road to recovery. Altogether she spent almost six months at Mount Sinai. Her parents traveled to New York from Australia and were by Amelia’s side the entire time. She returned home with them in November 2018 to undergo rehabilitation.
“Every day the team of doctors took time to explain her status to me as I sat there and waited anxiously for any little bit of information. When Amelia was in the ICU, I did not know whether she was ever going to wake up again,” says mom, Rozi. “The nurses in every ward that she was in, went over and above their duties, and took time to get to know us, showed care and concern beyond our expectations. We are forever indebted to all of you at Mount Sinai.”
Amy designed a personal thank you card with heartfelt words of appreciation for the care she received. “A thank you doesn’t cut it,” she wrote, naming all the staff who took care of her, including Dr. Fields, Dr. Marcuse, and Dr. Yoo; epilepsy fellows Bonnie Wong, MD, and Nisali Gunawardane, MD; EEG Technician Tsana Yu; and Neurosurgery Intensive Care Unit attendings.
“Tsana would sit by my bedside through the night and whenever she was not on duty, and talk and sing to me while I was in the coma,” Amelia recalled her mom telling her. Calling the Mount Sinai team “rock stars,” Amelia also recognized ‘‘all the nurses who took time to know me,” adding, “I was so grateful to be surrounded by kindness and strong women.” She expressed special thanks to the staff for “crying and laughing” with her parents and partner and giving them “strength, support and safety.”
Amelia remains in Australia, making good progress, according to her mom. “We have her back, almost as good as new, and we are forever grateful to you all. I personally could not have gotten through that difficult time without the kind words and support from the doctors and nurses. Your patient care really does not stop at the patient only, you made the family feel included and that is so important in Amelia’s recovery.”