Naomi had to undergo a high risk surgery; a first of its kind in Singapore.
Whereas Naomi's main doctor was a neurologist, she was also looked after by a cardiologist who suggested a number of strategies to deal with Naomi's heart condition. One of the options was to implant a cardioverter defibrillator (an ICD) which, in case an arrhythmia would cause the heart to fibrillate, would have the ability to shock it back into a normal rhythm. Whereas this sounded like the best option, the operation to implant the ICD posed significant risk.
Naomi's neurological condition was a serious concern too, as was the need to put her in induced coma, which she might not be able to come out of. On top of that, the doctors needed to inflict a cardiac arrest to test if the ICD was working well, which added the risk of her heart not being able to regain a normal rhythm. Beside all this, Naomi was too small to have the device implanted in the normal way, so an alternative and more complicated way of implantation had to be devised. The head cardiologist informed us that no such operation had previously been performed in Singapore and suggested that it might be better to have the surgery done in Europe or the US instead. They wanted us to understand there was a “non-negligible chance" that Naomi would not survive the operation and that it was up to us to make the decision. The other options were not particularly favourable either and we found it difficult to make a decision.
Over the next few days, before we had decided what to do, Naomi suffered three more cardiac arrests. All three times I was sitting or standing next to her bed and could immediately call for help. Each time the same things happened:
Naomi's heart rate shot up, I saw panic in her eyes, she turned stiff as a board, arched backwards, her eyes rolled up until only the whites were visible, she lost consciousness, all stiffness was gone and I heard the flatline sound of the heart monitor.
Horrifying. When I close my eyes now and think about it, I can still see it happening. I can only imagine how scary these cardiac arrests must have been for Naomi. Each time, Naomi was quickly surrounded by doctors and nurses who worked together to rapidly execute all necessary procedures. All I could do was get out of the way.
As I stood there, heart in throat, frightened and feeling the sudden tension that pervaded the room, it was terrifying to see them shocking Naomi with the defibrillator. Her chest and arms jerked up when the current shot through her little body, after which I looked at the heart monitor hoping to see the flatline change into a normal rhythm. Thankfully, she survived all cardiac arrests but each one felt like a setback as each time additional damage could be done to her already hurt heart and brain. How much, the doctors could not say. What was absolutely clear, was that we needed to implant that ICD.
As we decided to do the operation, confirmed the import of the device from the US, signed the waiver forms and agreed on the surgery arrangements, I was approached by a member of the hospital's finance department. Our insurance company had reviewed a report written by Naomi's cardiologist which stated that her heart condition was caused by what was deemed to be a genetic disorder, and therefore the insurance company had informed the hospital that they would no longer cover the expenses as they did not cover congenital diseases. The hospital then urged me to pay the huge and rapidly increasing bill ourselves. I tried to convince the insurance company to continue cover and not claim back the money they had already paid out but after numerous phone calls and emails during this already difficult time, they eventually voided Naomi’s policy and I had to assure the hospital that I would pay for everything myself. It was another blow we had to incur.
After an agonisingly long wait, the ICD and other materials for the implantation arrived and a team of doctors, medical consultants and a surgeon prepared for the operation. When the day of the operation came, the team came to see Naomi early in the morning. Naomi had been prepared and everything was ready to go. I could see that Naomi felt something was about to happen and that she was aware of the activity around her. Then a nurse came in and took Naomi's temperature. It turned out she had a low grade fewer of which the nurse informed the cardiologist. The team discussed and decided the operation had to be postponed.
Immediately after we received the news that the operation had been rescheduled and was deferred until the next morning, Naomi fell asleep, slept throughout the day, slept throughout the night and was still sleeping when the doctors arrived the next morning. Surprising, given that she hardly slept for more than a few hours at a time.
With Naomi's fever gone, Naomi was prepared for the operation. Then the moment came when she had to be transferred out of the ICU and into the operating theatre. Still sleeping, Naomi was pushed into the OT and disappeared behind closed doors. That was a very difficult moment. It reminded me of when they took Naomi away from us in Shanghai. There it took many days before we saw her again. This time round, we were told Naomi would be back in the afternoon. It was going to be a long operation that would last six hours and would be completed around 3pm.
At 5pm, we were still waiting. At last, a nurse came and told us she received a phone call from the operating theatre. The cardiologist wanted to speak with me. Nervous about what he was going to say, I followed the nurse to the office and was handed the phone. The cardiologist explained that the operation had gone well but that they experienced a tough time testing the device, hence the delay. In the end, the implantation was successful and Naomi was released back into the ICU. We were so relieved. It was at that moment the doctor told us that Naomi was the first child in Southeast Asia who had received such implantation. The operation was a significant achievement and the team was glad all had gone well.
The next day we learned there were complications and Naomi had to be operated again. This time I was allowed to accompany her into the operating theatre. I had never been in an OT before and the only visuals I had were from what you typically see on television. Now I was really there. It felt tense. We were surrounded by people wearing surgical gowns and face masks (including myself) and, knowing what was going to happen, I felt so sorry for Naomi. I looked into her eyes and she looked back into mine. They then administered the anaesthesia and asked me to leave the room. I wanted to stay but knew I could not. I felt so sad leaving Naomi behind on the operating table.
Another long operation and agonising wait followed. Once again, Naomi made it through. Afterwards, no complications developed and the surgery was declared a success. The last few months had been an incredibly exhausting and emotional roller coaster ride. The fact that the implantation had been successfully completed was such great news. Although not a guaranteed failsafe, the ICD greatly increased Naomi's chances of surviving any new cardiac arrests.
Comments