Jacqueline: ‘Looking back, it was a blessing in disguise that Didier had passed meconium. Otherwise, we would’ve just gone home with him, unaware of the leukemia. The leukemia cells were dividing so rapidly that every minute counted. Within just four hours, we went from a beautiful home birth to a newborn hooked up to tubes in a hospital. That’s also when we were told there was a suspicion of Down syndrome. Our world turned upside down in an instant.’
Always Welcome
Until the newborn was taken to the hospital, the family was overjoyed. Jacqueline: ‘We had no idea about Didier’s condition during my pregnancy. During the COVID period, fewer people were able to get a NIPT test, which can detect conditions like Down syndrome. As a result, my test came too late. The pregnancy went perfectly, so I wasn’t worried. And this baby was always welcome, Down syndrome or not. But we would have preferred to know beforehand. That way, we could’ve prepared for what was coming, because everything is different with a child who has Down syndrome.’
Michael: ‘A child with Down syndrome develops very differently than other children. For example: Didier is now three and a half, and he still can’t walk. He crawls everywhere.'
Shouldering it together
Back to fall 2021. After a stay in the neonatal intensive care unit at the Wilhelmina Children’s Hospital, newborn Didier is transferred to the Princess Máxima Center, where he stays for 11 more days and receives chemotherapy. Jacqueline: ‘Of course, it was a huge shock. We were expecting a healthy baby, and suddenly we’re in the hospital with a child who has both Down syndrome and cancer. But we immediately said: we’re doing this together, we’re rolling up our sleeves, and we’re going for it.’
Michael: 'During those weeks, the Máxima Center became our second home. It still feels that way, even though we only come for check-ups now. It might sound strange, but we really love coming here.’
Support from family was crucial in those early days. Michael: ‘Our parents helped us tremendously. At the time, we had three other children at home, and everything needed to keep going: school, laundry, cooking. They took all that off our hands.’
No expectations
After two weeks of chemotherapy, Didier’s main treatment phase is completed and he enters the maintenance phase. Now, three years later, Didier still comes in regularly for check-ups at the Máxima Center, since there’s a chance the leukemia could return. Michael: 'These past few years, I’ve learned not to have expectations. You can hope for things, but not expect them. I take it day by day and cherish the good moments. Today, he’s not sick and we’re having a good day – tomorrow might be different. It’s the same with Didier’s development: I don’t assume anything. If he starts walking tomorrow, that’s great. If not, that’s okay too. Everything in its own time.'
Jaqueline: ‘Above all, Didier is a sweet little boy. He adores his brothers and sisters, and they adore him. We’re proud of our special family, and especially of our little fighter Didier. Every day, he teaches us something new.’
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