The night our world collapsed

Naomi suddenly let out a scream. Less than an hour later, she was in the ICU, in such a critical condition that the doctors asked if we wanted to continue treatment.

The scream

Naomi and Sienna were asleep in their room. They shared a bunk bed, with Naomi — who had just turned six a week earlier — sleeping on the top bunk. Paulina and I were in our bedroom next door. I remember the moment vividly: I was packing my suitcase, as I was due to fly to São Paulo for work early the next morning. Suddenly, Paulina heard Naomi let out a brief scream and asked me to go and check on her. I walked into the girls’ room and found both of them apparently asleep. I tapped Naomi on her arm and quietly asked if she had called us. There was no response. When I touched her leg, I noticed her pyjamas were wet, which struck me as strange because she hadn’t wet the bed in years. Then the thought crossed my mind that she might have fainted. I tried to wake her, but still there was no response. I turned on the light and saw that Naomi was as white as the bedsheet beneath her. I panicked and tried to sit her up, but she appeared completely lifeless and was not breathing.

This was how we discovered that Naomi had suffered a cardiac arrest. She was rushed by ambulance to the resuscitation room of the Shanghai Children's Medical Center, the nearest paediatric hospital. After multiple attempts, the doctors were able to get Naomi’s heart beating again, albeit at a too low rate. She was then rushed to the intensive care unit and disappeared behind closed doors.

In agony, we waited just outside the ICU. After what felt like an eternity, one of the doctors came out and asked us to wait in a room where the head doctor would explain Naomi’s condition. When the head doctor finally came to see us, he told us that Naomi was in critical condition and had a dangerously low and irregular heartbeat, as well as total organ failure. She lay in a coma, attached to life-support equipment. Judging from the acidity of her blood, they estimated that Naomi must have been practically without oxygen for about 25 minutes.

We were told that if she were to survive, she would almost certainly remain in a vegetative state for the rest of her life. Knowing the prognosis, we were asked whether we wanted to continue treatment. The thought of turning off the equipment and letting Naomi die was unbearable. We told them to continue.

Naomi spent two weeks in the ICU. Parents and other visitors were not allowed inside, so we could not be with her. The only way to see her was through a small computer monitor in the waiting room. Every day at 3 pm, the computer was turned on, and crammed together with the other parents, we would watch a grid of live video feeds from cameras inside the ICU. It was terrible to see that tiny image of Naomi lying there, on her own, in such critical condition.

The first couple of days, we slept on the floor in the corridor outside the ICU. We wanted to stay as close to Naomi as possible. We felt utterly powerless. We longed to be with her, but we could not. After two agonising weeks, Naomi’s organs gradually regained normal function. The doctors told us Naomi had started breathing on her own, that her heart rate was increasing but that she remained unstable and that there were two major problems.

Something was wrong with her heart

The first problem was that Naomi’s heart appeared to have an incurable disorder called Long QT syndrome. It’s a rare condition in which the heart’s electrical system takes too long to reset after each beat. If a new beat occurs before the heart is fully ready, it can trigger a dangerous arrhythmia that may lead to ventricular fibrillation and sudden cardiac arrest. While she was asleep, Naomi most likely experienced such an arrhythmia, which first startled her awake and then caused her heart to stop. Thankfully, she let out a brief scream, giving us the chance to find her before it was too late.

The scan

The second problem was Naomi’s brain, which after such severe oxygen deprivation was most likely damaged. To determine the extent of any brain injury, she had to undergo an MRI scan. When Naomi was transferred from the ICU to the MRI room, I went along with her.

Because she was still so unstable, I was terrified that something might happen while she was inside the MRI machine. The scan seemed to take forever, and the equipment made loud, unsettling noises the entire time. I held on to Naomi’s ankle, trying to feel her heartbeat. I kept wondering whether she could hear all that noise. What if she was frightened inside that machine? What if it triggered another cardiac arrest?

When the procedure was finally over and Naomi emerged from the scanner, I looked through the window at the staff in the control room. Naomi’s doctor was there. She looked at me, smiled, and raised her thumb. When we met her outside the room, she told us that Naomi’s brain was fine. I cannot describe the relief I felt.

The next day, when we met Naomi’s neurologist to discuss the MRI results, our relief turned into despair. He told us that Naomi had suffered severe, diffuse, irreversible brain damage. The previous day’s initial assessment had been wrong, and once again our world collapsed. We hit an all-time low. Naomi was indeed in a vegetative state.

A living nightmare

When Naomi was discharged from the ICU and transferred to a regular ward, we could finally be with her. But she was no longer the cheerful, chatty, energetic little girl we knew. Stiff as a board, she lay motionless in her bed. Her arms were tightly contracted, her legs completely straight. Her feet were fully flexed, like a ballerina standing on her toes. Her chest rose and fell with great effort as she struggled to breathe. Her eyes were blank, continuously rolling from left to right and back again. We had no idea whether she knew we were there, or whether she could hear or see us.

Just two weeks earlier, we had been celebrating her sixth birthday in a cosy pizzeria. She and her friends had so much fun. They made and ate their own pizzas and the place was full of joy and laughter. Now her life hung by a thread in a cramped, depressing room at the end of a long hospital corridor. Her small metal bed, with a crank to lift and lower it, sat on a dirty floor beside a stained wall. Occasionally, we spotted cockroaches crawling by, and people — including medical staff — were smoking in the nearby hallway. It felt like we had been hurled into another dimension. It was surreal.

We stayed with her around the clock. Throughout the night, we took turns: one of us stayed awake, watching her, while the other tried to “sleep” for a few hours. We constantly checked the heart monitor. We were terrified.

At night, Naomi’s heart rate would drop below 40 beats per minute, while a healthy rate should have been somewhere around a 100. Every night, her body would suddenly become incredibly stiff. She would arch backwards into a frightening bridge-like position, her eyes rolling up until only the whites were visible. Each time it happened, we panicked. No one explained what was happening to her. Each time her body seized like that, we shouted for help. A doctor would come in and administer medication that caused Naomi to relax. They warned us that the medicine was bad for her, saying it in a way that made it feel as though we were the ones asking for it. We didn’t know what else to do. What we were witnessing was terrifying, and we were desperate for it to stop. Night after night, we lived with the fear that Naomi would not survive until morning.

It was a time of constant fear, a nightmare we had fallen into and could not wake from.

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