Nicholas was born at Halmstad Hospital on August 30, 2008. He lived in Falkenberg for eight years, in Hisingen in Gothenburg for three years, six months alternating between Hisingen and Gunnilse, and two years and five months alternating between Hisingen and Hindås outside Gothenburg.
Nicholas passed away at Queen Silvia's Children's Hospital on February 13, 2022. He left behind a younger full sibling and two older half-siblings on his father's side.
When Nicholas was only a day old, a cardiologist named Solveig Harning at Halmstad Hospital discovered that he needed urgent heart surgery. Nicholas was transported by ambulance to Lund for surgery with his mom and dad following in a car behind the ambulance.
The heart surgeon was the legend Peter Jögin, who was very pleased after the operation. He was a perfectionist (which heart surgeon isn't?) and rarely satisfied, but this time he walked through the corridor smiling after the operation. Shortly after that year, he retired. He had closed a hole between the chambers with a piece of Gore-Tex and replaced a valve that was too narrow with a homograft (conduit), a part from a deceased person.
We knew that Nicholas would need to replace this valve at some point since his heart would outgrow it and it would calcify, possibly as early as at the age of five. But it turned out to be a few weeks before Nicholas's 11th birthday, in August 2019. That operation went without problems. Nicholas was home again two weeks after the surgery.
When Nicholas was six months old, his stomach began to swell, and his stool turned white. The doctors determined that his liver was beginning to shrink. They had no more answers as to why than they did about why his heart was malformed at birth. DNA investigations on both heart and liver were conducted in Switzerland, but the malformations could not be traced genetically.
We had to tube-feed Nicholas at home and wait for a liver transplant. It turned out that Nicholas's mother was the suitable donor among us parents based on her blood type.
After the transplant, Nicholas received immunosuppressive medication (Prograf), and virus strains grew that threatened to kill him. But he survived, and by the age of one, he was medication-free. He was one of five liver-transplanted children in Sweden at the time who did not need immunosuppressive medication – and he would remain medication-free and normally healthy until two months after the Moderna COVID vaccine when he fell ill with sepsis and endocarditis on December 4, 2021. He was 13 years and five months old.
Nicholas's mother and I were psychologically affected by Nicholas's first year. Various circumstances led us to separate and divorce when Nicholas was five years old. The following two years were difficult between us – but after that, our cooperation became consistently very good. Nicholas loved his family and his life.
The same care that saved his life multiple times – ended up killing him.