The night our world collapsed

Naomi let out a scream. Soon after, she was in intensive care.

The scream

Naomi, who had just turned six a week earlier, and Sienna were asleep in their room. They shared a bunk bed, with Naomi on the top bunk. Paulina and I were in our bedroom next door. 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. Strange. She hadn’t wet the bed in years. 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.

Naomi was as white as the bedsheet beneath her.

I panicked. I tried to sit her up. She was completely lifeless. She wasn't 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 her heart beating again, albeit at a dangerously 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 he finally came, he told us Naomi was in critical condition. Her heartbeat was too low and irregular. She had total organ failure. She lay in a coma, attached to life-support equipment.

Based on the acidity of her blood, they estimated she'd practically been without oxygen for about 25 minutes.

We were told that if she survived, she would almost certainly remain in a vegetative state for the rest of her life. And then, just like that, we were asked whether we wanted to continue treatment.

The thought of turning off the equipment and letting Naomi die was unbearable.

So we told them to continue.

Naomi spent two weeks in the ICU. Parents 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. Crammed together with other parents, we watched a grid of live video feeds from inside the ICU. It was terrible to see that tiny image of Naomi lying there, alone, 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 her as possible.

We felt utterly powerless.

We longed to be with her, but we couldn't.

After two agonising weeks, Naomi’s organs gradually regained normal function. The doctors told us she had started breathing on her own and that her heart rate was increasing, though she remained unstable.

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 — first startling her awake, then causing her heart to stop. Thankfully, she let out a brief scream, giving us the chance to find her in time.

The scan

The second problem was Naomi’s brain. After such severe oxygen deprivation, it was most likely damaged. To determine the extent of any 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 something might happen while she was inside the machine. The scan seemed to take forever. The equipment made loud, unsettling noises the entire time.

I held on to her ankle, trying to feel her heartbeat.

I kept wondering whether she could hear the noise. Whether she was frightened. Whether it might trigger 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. Her doctor was there. She looked at me, smiled, and raised her thumb.

When we met her outside, she told us Naomi’s brain was fine.

I cannot describe the relief I felt.

The next day, when we met Naomi’s neurologist, our relief turned into despair. What we had been told the day before was wrong. Naomi had suffered severe, diffuse, irreversible brain damage.

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. Her eyes were blank, continuously rolling from left to right and back again.

We had no idea whether she knew we were there.

Just two weeks earlier, we had been celebrating her sixth birthday in a cosy pizzeria. The place had been full of joy and laughter.

Now her life hung by a thread in a cramped hospital room at the end of a long corridor.

Her small metal bed stood on a dirty floor beside a stained wall. Occasionally, we saw cockroaches crawling by. People — including medical staff — smoked in the nearby hallway.

It felt like we had been hurled into another dimension.

We stayed with her around the clock. At night, we took turns — one awake, watching her, while the other tried to sleep.

We constantly checked the heart monitor.

We were terrified.

At night, Naomi’s heart rate would drop below 40 beats per minute. Every night, her body would suddenly become rigid. She would arch backwards into a frightening bridge-like position, her eyes rolling up until only the whites were visible.

Each time, we panicked.

No one explained what was happening.

Each time, we called for help. A doctor would come and administer medication that caused her body to relax. They kept warning us the medicine wasn’t good for her, implying we were the ones asking for it. But what else was there to do?

What we were witnessing was terrifying.

Night after night, we feared Naomi wouldn't survive until morning.

It was a time of constant fear, a nightmare we had fallen into and couldn't wake from.

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