'It was worth everything to me'

As a baby, Abigail urgently needed a liver transplant due to a rare condition: biliary atresia. Her mother Annemieke decided without hesitation to donate part of her own liver. In this personal story, mother and daughter talk about their intense experience, the long recovery, and the gratitude that remained.

Suddenly ill after a carefree start

‘I don't notice anything,’ says Abigail about her special liver. ‘The only thing is that I have to take medication for the rest of my life. Otherwise, I can do everything. But I do know what happened. And I think it's important that others know this too.’

Her mother Annemieke tells how it started. ‘We were living on cloud nine. On day 11, she got a small abscess in her groin, but we weren't worried yet. That only started when she bled from her belly button and it wouldn't stop. Abigail even started to look grey. The emergency room sent her to a pediatrician, and then she was transported with wailing sirens to the children's hospital.’

Rare diagnosis: biliary atresia

After a period of uncertainty, the cause came to light. Abigail turned out to be 1 of the approximately 10 babies per year born with biliary atresia: her bile ducts were blocked, preventing bile from flowing out of her liver. A first operation had to create a drainage channel.

‘Back then they said that Abigail would need a liver transplant one day, perhaps as a teenager. But the operation didn't help. Shortly after, we were already talking about a transplant at the UMCG in Groningen, the only hospital that performs transplants on children. There we heard that the waiting list for a donor liver was 1 to 1.5 years. Abigail didn't have that long.’

Mother becomes a living donor

Annemieke decided to give her daughter a part of her liver herself. ‘I had stopped working when Abigail turned out to be ill, and my husband Samuël was the breadwinner, so it seemed most logical to us that I would do it.’

The medical screening showed that mother and daughter were a good match. ‘I thought: of course we match, I'm her mother, aren't I? But later I heard that such a match depends on many factors and is therefore not a given for parent and child.’

A drastic but valuable choice

Annemieke didn't doubt her decision for a moment, but the risks were certainly there. ‘It's actually crazy that you have to undergo such a dangerous operation because there is such a long waiting list. Still, it was worth everything to me. I went into it quite carefree. But I also had a conversation with a psychologist. When she gave me the task of writing down my wishes for my potential funeral, I discovered how risky it was.’

The operation was tough, but successful. A day after the transplant, Annemieke was allowed to leave the ICU to go and see her daughter, bed and all. ‘It was a rollercoaster,’ she says. ‘You live day by day.’

Rehabilitation after the liver transplant

The recovery period was intense, for both mother and daughter. ‘We experienced a lot of support from our faith, the Christian church, and our family. That is very nice when you don't know what you are going through. It is special that it worked out. I have also heard of children who didn't make it. And the rehabilitation took a long time. But everything turned out well.’

A healthy child, with a special past

‘You don’t notice anything about Abigail anymore,’ says Annemieke. ‘In the beginning, she was a bit slower in her development. She started walking at just over 2 years old, for example. And when she went to preschool, we found that nerve-wracking. But you also don’t want to keep her in a glass cage.’

Looking back with wonder

Only later did the realization of what they had been through sink in. ‘It wasn’t until our second daughter, Salomé, that I truly realized what we had been through with Abigail. I would think, for example: Salomé is 3 months old now, and with Abigail, we were in Groningen at that age. Everything was much more carefree. And with our youngest, Tobias, I haven’t had that feeling of looking back anymore.’

Annemieke is grateful that things are going well now, even though she remains vigilant. ‘I find it a bit nerve-wracking now that everything is changing in Abigail’s body during puberty: the liver can react to that too. But so far, everything is going well. And sometimes I can suddenly get teary-eyed, like when Abigail performed in her graduation musical in 8th grade. Then I think: look at where she is!’