Don’t get your hopes up

The doctors told us to leave — but warned that Naomi might not survive the journey.

Where should we go?

After a few days in the general ward, Naomi no longer suffered from those horrific seizures, but she remained extremely fragile. All this time, she had not “woken up.” We still did not know whether she was aware that we were there with her. Our once cheerful little girl was now only a shadow of her former self, and we feared she would indeed remain in a vegetative state. We were utterly beaten down and depressed.

Naomi’s doctor told us we could stay in the hospital for a while, but there was nothing more they could do. She urged us to take Naomi to our home country for further treatment, but warned that she might not survive the journey. Each day, they reminded us to go, but we couldn’t bring ourselves to leave. What if something happened with her during the flight? A few days later, the doctor declared Naomi stable enough for transfer and asked us to leave the hospital. She made clear, though, that the danger of heart failure and seizures was still high. The choice was ours as to where to go. It was the first of many critical decisions we would have to make — decisions where none of the options seemed favourable.

We were afraid to leave the hospital, but staying was not an option. If Naomi’s treatment was to continue, we had to take the risk of leaving — not just the hospital, but the country.

To minimise the risks during travel, we wanted to go somewhere close. Jakarta, Paulina’s hometown, didn’t seem ideal, and my home country, Holland, was far too long a flight. Considering the quality of potential hospitals, we narrowed it down to two options: Hong Kong or Singapore. We ruled out Hong Kong because we wanted to be in a place where we could communicate freely in English.

We decided on KK Women’s and Children’s Hospital in Singapore. The next question was how to get there. I had to discuss this with our insurance company, which sent a medical evacuation specialist to the hospital. To make the transfer possible, six seats were removed from a Singapore Airlines plane to install a bed and the necessary medical equipment. Naomi would be accompanied by two doctors who would care for her throughout the journey.

The journey

Exactly one month after Naomi had been rushed to the hospital, we left for Singapore. Early in the morning, an ambulance drove Naomi and me to the airport, while Paulina and Sienna followed by car. At the airport, Paulina, Sienna and I went through the usual procedures, while special arrangements had been made for Naomi and the doctors.

When we reached the gate, we looked at the plane and wondered if Naomi was already on board. After a while, we saw an ambulance arrive at the plane’s tail. The rear door opened, and Naomi, along with all her medical equipment, was lifted on a platform normally used for luggage. It was a surreal sight, a stark reminder of how critical her condition was. Naomi was transferred into the plane and disappeared from view.

When we finally boarded, we were relieved to see Naomi in good hands, though it was heartbreaking to see her lying on that bed, surrounded by monitors and other equipment. Thankfully, she was peaceful during the flight, just as she had been in the ambulance. After five hours, we landed smoothly at Changi Airport, where an ambulance awaited us. We hurried to the hospital and arrived in a modern, clean and private room. And all the doctors spoke English. Relieved that Naomi made it there safely, we dared to hope that her rehabilitation could begin.

The next morning, we met the head neurologist who would oversee Naomi’s care. He walked into the room, introduced himself, glanced at Naomi, and said: “I’ve seen many of these kids. Don’t get your hopes up.” That summed up the visit. We were flabbergasted and devastated. After everything we had endured, this was not the welcome we had expected.

Three more times we almost lost her

While Naomi’s main doctor was a neurologist, she was also under the care of a cardiologist, who outlined several strategies for managing her heart condition. One option was to implant an implantable cardioverter-defibrillator (ICD), a device designed to detect dangerous arrhythmias and stop them by delivering electric shocks to restore a regular heartbeat. Although this seemed like the most promising option, the surgery itself carried significant risks.

Naomi’s neurological condition was a serious concern, as was the need to place her in an induced coma, from which she might not be able to emerge. On top of that, during the procedure the doctors would need to deliberately induce a cardiac arrest to test whether the ICD was functioning properly, raising the risk that her heart might not recover a normal rhythm. Naomi was also too small for the device to be implanted in the standard way, requiring a more complex and unconventional surgical approach.

The head cardiologist told us that such an operation had never been performed in Singapore and suggested it might be safer to have the surgery done in Europe or the United States. He wanted us to understand that there was a “non-negligible chance” Naomi would not survive the operation, and that the decision was ours to make. The alternative options were hardly reassuring either, and we found ourselves facing a difficult choice.

Over the next few days, Naomi suffered three more cardiac arrests. Each time, I was right beside her and could immediately call for help. Each episode followed the same terrifying pattern. Naomi’s heart rate would suddenly shoot up. Panic filled her eyes. Her body went stiff as a board and arched backwards. Her eyes rolled up until only the whites were visible. Then she lost consciousness, the stiffness vanished, and on the heart monitor I saw the line flatten as the machine emitted its continuous, piercing tone. Horrifying.

Even now, when I close my eyes, I can still see it happening. I can only imagine how terrifying those moments must have been for Naomi. Each time, doctors and nurses rushed in and worked with swift precision to carry out the necessary procedures. All I could do was step aside. With my heart in my throat, frightened and acutely aware of the sudden tension that filled the room, it was terrifying to watch them shock Naomi with the defibrillator. Her chest and arms jerked as the current surged through her little body. Afterwards, I stared at the heart monitor, hoping to see the flatline give way to a normal rhythm.

Thankfully, she survived each cardiac arrest, but every one felt like a setback. Each episode carried the risk of further damage to her already injured heart and brain. How much damage, the doctors could not say. What was absolutely clear was that we needed to implant the ICD.

Preparations for the operation began, and the import of the device from the United States was confirmed. After I had signed the consent forms and agreed on the surgical 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 stating that her heart condition was caused by a genetic disorder. On that basis, the insurer informed the hospital that they would not cover the costs, as congenital conditions were excluded from the policy. The hospital then urged me to assume responsibility for the rapidly increasing medical bills.

I tried to convince the insurance company to continue coverage and not reclaim the amounts they had already paid. Despite numerous phone calls and emails during an already overwhelming time, they eventually voided Naomi’s policy altogether. I was left with no choice but to assure the hospital that I would pay for everything myself. It was yet another blow.

Much later, based on biopsies sent to the Amsterdam Medical Centre in The Netherlands, it became clear that Naomi’s condition was not genetic after all. None of us carried the mutation. It had been caused by a spontaneous mutation. But the insurance company stood by the cardiologist’s original conclusion. What did give us comfort, though, was knowing that Sienna was safe and did not have the same heart condition as her sister.

The operation

It took a long time for the ICD and other materials needed for the implantation to arrive. Once everything was ready, a team of doctors, medical consultants, and a surgeon immediately began preparing for the surgery. On the day of the operation, the team came to see Naomi early in the morning. She had been prepared, and everything was set. I could sense that Naomi felt something was about to happen and that she was aware of all the activity around her. Then a nurse came in to take her temperature. Naomi appeared to have a low-grade fever, which the nurse promptly reported to the cardiologist. After discussion, the team decided to postpone the surgery.

As soon as we received the news that the surgery would be deferred until the next morning, Naomi fell asleep. She slept throughout the day, through the night, and was still sleeping when the doctors arrived the next morning — amazing, given that she had not been sleeping more than a few hours at a time since her hospitalisation in Shanghai.

Naomi no longer had a fever and was ready for the operation. The moment came to transfer her from the ICU to the operating theatre. Still vast asleep, Naomi was pushed into the OT and disappeared behind closed doors. That was such a difficult moment, reminding me of when they had taken her away in Shanghai. Then, it had been days before we saw her again. This time, we were told she would return in the afternoon, with the operation expected to last six hours, finishing around 3 pm.

At 5 pm, we were still waiting. At last, a nurse came and told us she had received a phone call from the operating theatre. The cardiologist wanted to speak with me. Nervous about what he might say, I followed the nurse to an office and was handed the phone.

The cardiologist explained that the surgery itself had gone well, but that they had struggled while testing the device, which caused the delay. Eventually, the implantation was successful, and Naomi was transferred back to the ICU. We were so relieved.

Naomi was the first child in Singapore to receive an ICD implanted in this particular way. Because of her small size, the ICD had to be implanted in a way that had not been done before. The surgery was considered a significant achievement, and the team was relieved that everything had gone well.

We weren't out of danger

The next day, we learned there were complications and that Naomi had to undergo another surgery. This time, I was allowed to accompany her into the operating theatre. I had never been in an OT before. My only reference was what you typically see on television. Now I was really there.

The room felt tense. We were surrounded by people in surgical gowns and face masks, including myself, and knowing what was about to happen, I felt so sorry for Naomi. I looked into her eyes and she looked back into mine. As I gave her a hug, they administered the anaesthesia, and once Naomi’s eyes closed, they asked me to leave the room. I wanted to stay, but of course I couldn’t. Leaving Naomi behind on the operating table was heartbreaking.

Another long operation and agonising wait followed. Once again, Naomi made it through. No complications developed, and the surgery was declared a success.

The past few months had been an exhausting and emotional roller-coaster. Knowing that the ICD implantation was now behind us was an immense relief. Although not a guaranteed failsafe, the device greatly increased Naomi’s chances of surviving any future cardiac arrests.

I tried not to think about it, but we had reached a point where we might have to face such cardiac arrests outside the hospital, where no doctors would immediately come to the rescue — where we were on our own. It was a terrifying thought. One that would soon become reality.

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Next: Our new reality