First Birthday

First Birthday

Coming home was a bit more stressful than we anticipated. There was a lot of medication to keep track of. It seemed simple in the hospital, but without any help, at home, it was a much bigger challenge.

My wife's mission then quickly became to get rid of the feeding tube as soon as possible. With the tube, Alexander did not feel hungry or get any impulse to eat or drink. We had seen children having to have the tube for years because it just became really hard to get them on real food again. After attempting countless tricks, she succeeded to get rid of the tube after only a month! Below is an instruction video we made for the hospital to show how we did it.

This worked very well, and after two months the feeding tube could be removed from him. And two months before his birthday! This was an excellent result.

For Alexander's birthday, Zuzana decided to try and make him a special cake. She spent three weeks trying to figure out how to make a colourful cake, yet without the sugar and other additives. Three cakes later she managed, making Alexander really happy with his special monster cake.

Alexander is very happy with his birthday cake

Alexander was doing very well and the general checkups could be rapidly decreased in frequency. He experienced no further complications except the one he already had: a very narrow part in his portal vein. But even that showed no signs of worsening. After all these experiences, he is still an amazingly happy, playful little dude.

Pappi with Alexander on his birthday.
Alexander distracted whilst playing with his blocks.

All in all Alexander was very lucky. He was one of very few to leave the hospital after only four weeks after such a major operation. And his chances further in life are looking good. The chance of survival for children after a liver transplantation has been rising the last two decades. Of the children that received a donor liver in the last ten years, 83% was still alive after five years. Ten years later that's 71%. Yearly, around 20 children receive a new liver in The Netherlands. And the results for children receiving a life liver from a relative are even better. After five years 95% of them are still alive.

The good prospects after a living related donation can be explained by the fact that the procedure can be meticulously planned, so the receiver and the donor are in optimal condition. The liver spends very little time deteriorating outside the body as the operations are performed simultaneously in the same hospital. Both also get thoroughly screened, and of course the donor is very healthy, and … not dead.

Alexander on the beach for the first time.
Alexander reading one of his grandfathers books.

Children with Biliary Atresia, like Alexander, get referred to specialists much more quickly as knowledge on the condition is becoming more wide-spread in hospitals. Alexander was referred within two weeks, but the diagnosis was already made after two days, which was actually a bit too quick to verify it.

The living donor liver operation has only been performed since 2004 in Groningen. Alexander was the 42nd child to receive a liver in this way.

Read on