Don’t get your hopes up

The doctors told us to leave, but warned she 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 no longer herself, 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 told 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, the Netherlands, 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 easily in English. So 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’s cardiac arrest, 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 clean, modern, 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.

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A non-negligible chance →