The doctors diagnosed Naomi with severe, bipolar, diffused and irreparable brain damage.
Naomi spent two weeks in the ICU. The hospital did not allow parents or other visitors access to the unit so we could not be with her. The only way to catch a glimpse of our daughter was through the small computer monitor in the waiting room. Every day at 3pm, the computer was turned on so that, crammed together with the other parents in front of that little screen, we could see a grid of live video streams of various cameras placed within the ICU. It was terrible to see the tiny image of Naomi lying there in such critical condition.
The first couple of days we slept on the floor in the corridor outside of the ICU. We wanted to stay as close to Naomi as possible. We felt utterly powerless. We wanted to be with her but we could not. Fortunately, 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.
Long QT
The first problem was that Naomi's heart appeared to have a disorder for which there was no cure: a condition called Long QT syndrome. It is a rare condition that causes heart cells to take more time to prepare themselves for the next beat. If a beat occurs when insufficient cells are ready, that might trigger an arrhythmia which in turn can cause the heart to go into fibrillation and stop beating, leading to sudden cardiac death. Whilst asleep, Naomi most likely experienced an arrhythmia that first woke her up and then caused a cardiac arrest. Fortunately, she let out a brief scream so we could find out what had happened.
Brain Damage
The second problem was the brain. To determine to extent of Naomi’s brain damage, she had to undergo an MRI scan. Naomi was transferred to the MRI room and I went along with her. With Naomi being so unstable, I was so afraid something would happen with her whilst inside the MRI machine. The procedure seemed to take forever and the equipment was constantly making loud and unsettling noises. The whole time I held on to Naomi’s ankle, trying my best to feel her heartbeat. I wondered if Naomi was aware of all that noise. What if she was? What if she was so scared inside that machine that she would suffer another cardiac arrest? When the procedure had finally been completed and Naomi emerged from the MRI machine, 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 up to me. When we met her outside the room she told us Naomi's brain was fine. I cannot describe how relieved I felt.
The next day, when we met Naomi’s neurologist who had reviewed the MRI results, relief turned into despair when he told us that Naomi had suffered severe, bipolar, diffused and irreparable brain damage. The previous day’s initial assessment from Naomi’s doctor was wrong and our world once again collapsed. We hit an all-time low. Naomi was indeed in vegetative state. This only really dawned on us when she was released from the ICU and transferred to a normal ward. Now we could finally be with her, but she was no longer the same cheerful, chatty and active little girl from before. Stiff as a board, she lay motionless on her bed. Her arms were tightly contracted and her legs completely straight. Her feet were fully flexed, similar to the way a ballerina stands on her toes. Her chest moved as she was breathing with great difficulty. Her eyes were blank and continuously rolled from left to right and back again. We had no idea if she knew we were there, if she could hear or see us. It was surreal. Just two weeks ago we had a fun time celebrating her sixth birthday and now her life hung by a thread in a small, dirty and depressing room at the end of a long corridor of a hospital where the staff only spoke Chinese.
We monitored Naomi 24 hours a day. Throughout the night we would alternate: one of us stayed awake watching Naomi and the other would “sleep” for a few hours. We were constantly checking the screen of the heart monitor. We were so scared. At night, Naomi's heart rate would drop below 40 bpm whereas a healthy rate would be anywhere between 75 and 110. Also, each night Naomi would suddenly become incredibly stiff and arch backwards in such a scary way, it made us freak out. Her eyes would roll up until only the whites were visible. Nobody explained what was going on with Naomi. Each time this happened we shouted for help and a doctor would rush in to give Naomi medicine that made her relax. They told us this medicine was bad for Naomi. Every night we feared Naomi was not going to make it to the next day.
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