‘Within four hours, from a beautiful home birth to a baby connected to tubes in the hospital.’
Jacqueline: ‘Looking back, it was a blessing in disguise that Didier had passed meconium in the amniotic fluid. Otherwise, we would have just stayed home with him and had no idea about the leukemia. The leukemia cells were dividing so rapidly that every minute counted. In less than four hours, we went from a beautiful home birth to having a newborn baby connected to all sorts of tubes in the hospital. That’s also when we were told there was a suspicion that he had Down syndrome. Our world was turned completely upside down in an instant.’
Always welcome
Until the newborn Didier came to the hospital for a check-up, there didn’t seem to be anything wrong. Jacqueline: ‘We had no idea about Didier’s condition during my pregnancy. During the COVID period, fewer people could get the NIPT test, which screens, among other things, for Down syndrome. My test was therefore too late. The pregnancy went perfectly otherwise, so I wasn’t worried. And this baby was always welcome, even with Down. But we would have preferred to know beforehand. Then we could have prepared ourselves for what was to come. Michael: ‘The development of a child with Down syndrome is very different from that of children without Down. Didier is now three and a half, but he still can’t walk, though he’s an excellent crawler!’
We're in this together
Back to the fall of 2021. After a stay in the neonatal intensive care unit at the Wilhelmina Children’s Hospital, newborn Didier was admitted to the Princess Máxima Center, where he stayed for another eleven days and received chemotherapy. Jacqueline: ‘Of course, it was a huge shock. We expected a healthy baby, and suddenly we were spending weeks in the hospital with a child with Down syndrome and cancer. From the very beginning, we said: we’re in this together, we’ll put our shoulders to the wheel and face it head-on.’ Michael: ‘During those weeks, the Máxima Center became our second home. It still feels that way, even now that we only come here for check-ups. It might sound strange, but we truly enjoy coming here.’
Essential support
The support from our families was indispensable during that first period. Michael: ‘Our parents helped us tremendously. At that time, we still had three other children at home, and everything around them had to keep going—school, laundry, cooking. They took those daily tasks off our hands.’
No expectations
After two weeks of chemotherapy, Didier’s main treatment phase could be completed, and he moved on to the maintenance phase. Now, three years later, Didier still comes to the Máxima Center regularly for check-ups, as there is a chance that the leukemia could return. Michael: ‘Over the past few years, I’ve learned not to have expectations. You can hope for many things, but not expect them. I take things one day at a time and enjoy the good moments.’
Everything in his own time
Michael: ‘Right now, he’s doing well, and we’re having a good day. Tomorrow, things could be different. The same goes for Didier’s development: I don’t assume anything. If he starts walking tomorrow, that’s wonderful. If not, that’s fine too. Everything in his own time.’ Jacqueline: ‘Above all, Didier is such a lovely 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. We learn from him every single day.’
Also read:
- ‘Remember that it’s okay to ask for help, whether it’s practical or to share what’s on your mind.’Max (4) has leukemia, and his baby brother Melle always comes along to the Máxima Center. Their parents, Maartje and Mario, and their children are a close-knit family. For them, the Máxima Center feels like a place where not only Max, but the entire family is seen and supported.
- ‘My mother’s intuition told me something wasn’t right. Sem had COVID, but also leukemia.’Sem (3) has leukemia. His mother Miranda (35) talks about the road to the diagnosis, those first days at the Princess Máxima Center, and how she tries to stay grounded as a mother. ‘Trust your instincts, write things down, and take time for yourself now and then. That way you can be the best version of yourself for your child and the rest of your family.’
- ‘I often sense when something is wrong. This time, I truly wished I was wrong.’When her four-year-old daughter Ediene had symptoms for a long time, Jessica felt that something was not right. After weeks of illness and many unanswered questions, the diagnosis of leukemia was confirmed. Jessica shares how the weeks before the diagnosis unfolded and what the first days at the Princess Máxima Center were like.