When Lize (36) heard that something was wrong with her baby’s heart, her world stopped for a while. “At such a moment you have a lot of things to do. We ended up in a new life full of hospital visits and had no idea what to expect,” she tells Editie NL.
She remembers it as an uncertain time. “Not only because it had a lot of impact on us as parents, but also because I didn’t know how to explain it to our son David. He was almost three and was going to be a big brother, but suddenly everything turned out to be not so obvious anymore.”
There appeared to be little help in this area. “There is plenty of information available for parents in such a situation; we had many conversations with cardiologists. But for children – the brothers and sisters of the child with heart problems – there was nothing.”
She found that incomprehensible. “The effect on the older child is enormous. Mom and Dad often have to leave, the child may have to stay with grandparents, and it is questionable whether a living brother or sister will actually be born – how terrible that also sounds.”
Fortunately, her own son Sam (now 3 years old) went well thanks to open heart surgery. Once calm had returned to the house, Lize thought she might be able to give other parents what she herself had missed during that hectic period.
She wrote a book that parents can read with their children to prepare them for the period to come. In child language, she goes through all phases – from the moment of diagnosis to the day the baby is born. “It ends with the message: Either way, the baby is very lucky to have such a big brother or sister. That’s the moral of the story.”
The book – which consists of text and prints – was made possible thanks to donations that Lize raised through her own website and Instagram account. “The response I got was overwhelming,” she says.
She was far from the only one who has struggled with the lack of information on this subject. “It is not normal how many messages I have received from strangers who said: how we would have loved to have this when we were in the same situation. Some brothers and sisters even suffered from separation anxiety. Then it suddenly became very concrete for me how important this problem.”
Spread through care
Last Wednesday the book ‘Golden hearts: picture book for brothers and sisters of hartkindjes’ was published. Lize presented the first copy to the cardiologist of her own son Sam at the WKZ in Utrecht.
The children’s hospital is so enthusiastic about the book that they are now also distributing it themselves. “From now on they will check with every diagnosis of a congenital heart defect whether there are also other children in the family. If so, they will receive my book. And soon that will probably also apply to all other heart centers in the Netherlands,” says Lize proudly. “Well, then you understand: my mission has been accomplished. This was the ultimate goal.”