'It was worth everything to me'

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

Suddenly ill after a carefree start

'I don't notice anything of it,' Abigail says about her special liver. 'The only thing is that I have to take medication for the rest of my life. Otherwise, I can just 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 all started. 'We were 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 ashen. The emergency room sent her to a pediatrician, and then she was rushed to the children's hospital with wailing sirens.'

Rare diagnosis: biliary atresia

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

'Then they said that Abigail would someday, maybe as a teenager, need a liver transplant. But the surgery didn't help. Shortly after that, 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 time 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.'

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 second, but the risks were very real. 'It's actually crazy that you have to undergo such a dangerous surgery 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 assignment to write down my wishes for my eventual funeral, I discovered how risky it was.'

The surgery was tough, but successful. A day after the transplant, Annemieke was allowed to leave the ICU to visit her daughter with her 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 wonderful when you don't know what you are going through. It is special that it worked out. I've also heard of children who didn't make it. And the rehabilitation took a long time. But everything turned out fine.'

A healthy child, with a special past

‘You wouldn’t know there was ever anything wrong with Abigail,’ Annemieke says. ‘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 wrap her in cotton wool.’

Looking back with a sense of wonder

It was only later that they fully realised what they had been through. ‘It wasn’t until our second daughter, Salomé, that I truly realised what we had experienced with Abigail. For instance, I’d think: Salomé is 3 months old now, and with Abigail we were in Groningen back then. Everything was so much more carefree. And with our youngest, Tobias, I haven't had that feeling when looking back anymore.’

Annemieke is grateful that things are going well now, even though she remains vigilant. ‘I find it a bit tense 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 suddenly well up with tears, like when Abigail performed in her primary school leaving musical. Then I think: just look at where she is standing!’