'With the transplant, Lorenzo was born again'

The seriously ill baby Lorenzo was not going to make it. Only a piece of liver from a living donor could save him. Mother Fleur tells what his illness and transplant have done to them as a family.

Was Lorenzo already ill at birth?

'No, not yet. He was born prematurely in early 2024, at just over 34 weeks. Everything went well, but after five days his heart rate and oxygen levels in his blood suddenly dropped. Eight people stormed into our room. It also turned out that the acidity in his blood was too high. And we heard that his liver was enlarged. He had to go to the Radboudumc in Nijmegen.'

How did you manage things during that period with Lorenzo's older brother?

'He was able to go to my grandparents. We stayed in the Ronald McDonald House ourselves. We could also go there for conversations with the volunteers. A fantastic place that we benefited from a lot.'

How did things go with Lorenzo?

'He had a form of hepatitis, namely an inflamed liver. After that, he got all kinds of severe conditions and infections. I woke up startled one night and my gut feeling said: things are not going well with Lorenzo. When I called, they had just resuscitated him, we had to come immediately.'

How did you keep going?

'Lorenzo kept overcoming everything. Time and again he came very close to death and we had to say goodbye, but he kept surviving. My dream was to come home as a family of four. We were always convinced: we are going to take him home with us. I'm not really religious, but I prayed a lot with the rosary.'

How did it end?

'Lorenzo's liver was not going to get better. And it turned out he did have GALD. He needed a liver transplant. And that for such a little one of less than five kilos... Mike and I both wanted to donate a piece of liver, but for all sorts of reasons we both fell through as donors. An anonymous living donor donated a piece of liver. Lorenzo was three months old then.'

A piece of liver from a living donor, how special!

'Certainly. Through the screening doctor, we sent her a letter with a necklace with a little angel on it, because she was our guardian angel. We are very grateful to her.'

Did the transplant succeed?

'Fortunately, yes. When we arrived at the ICU after the operation, Lorenzo gave a big smile. We had never seen him so lively. He was also no longer yellow. After his rehabilitation, we were able to take him home. Things that are taken for granted, like eating together, were a miracle. There were still serious complications with another emergency operation, and infections. After that, he became stable and now he is a cheerful little boy.'

What has all this done to you as a couple?

'It has made us stronger together. Sometimes we drifted apart because we process things differently. But we are also a team. It also has major consequences. For example, Mike lost his job because of this; his contract was not renewed. So, the financial problems are added to that as well.'

What have you taken away from this?

'That you have to stay positive and keep fighting with the strength your child shows. Even in dark days, there is always a bright spot. I will keep that in mind for the future as well. Lorenzo remains a patient and the care is intensive. But my dream has come true: the four of us are a family.'