Weblog - Alexander

All posts about my son Alexander, his rare disease and travels through the Dutch medical system.

First Birthday

A little over four months after coming home from the hospital. And all is going well.


The operations were the easy part, recovery from them was quite another thing. We spent a total of four weeks in hospital recovering, before going home.

Transplantation Surgery

November fourteenth was the last day a deceased donor could be found for Alexander. That moment went by quickly, as they started preparing me for operation at six o'clock in the morning.

Liver Donor Operation Q&A

As not much could be said anymore before the operation, I devised this list of frequently asked questions with my father. Here I try to answer some detailed questions on the operation.

In Between

What where we doing when Alexander was not in the hospital? Since his diagnosis the care we had to give him went up tremendously.

Living liver donor

During Alexanders donor screening it became quite clear that if we wanted him to survive, hard choices needed to be made. For a child his age, the chances of getting a liver from a diseased donor are slim. So the only other option would be a living donor. Both me and Zuzana immediately volunteered.

Liver transplantation

All children with biliary atresia need a liver transplant at some point in their life, usually before the age of 20. A Kasai procedure can make the affected liver last a bit longer, but it is only a holding action, no permanent solution.

Kasai procedure

A routine checkup turned into something more. After Alexanders' biopsy, doctors were surprised by the absence of scar tissue, and thus biliary artresia. Two weeks later, we had a check up in Groningen to see how he was doing. Except we would be staying more than a week.

Biliary atresia

For a long time, no diagnosis could be made of what was wrong with Alex. The doctors had a long list of possible causes of his liver problems. With a large number of tests, scans and other examinations they attempted to find to true cause. In the end the most probable cause turned out to Biliary Artresia.

Alexander Felix Bethlehem

On april 5th 2017, at 19:30, my son was born in the Bronovo Hospital in The Hague. We named him Alexander Felix Bethlehem.



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