Vajèn

Hennie’s life changes drastically when her daughter Vajèn is born with the progressive hereditary muscle disease Myotonic Dystrophy (MD). The pregnancy initially seemed to go without problems, but after a planned caesarean section, Vajèn is born limp and without crying. While Hennie recovers from the birth, Vajèn is taken to an academic hospital for examination.

After 42 hours, Vajèn dies in Hennie’s arms, causing Hennie an irreversible trauma and grief. She describes this period as a nightmare, and the weeks that follow as heavy, marked by mourning and processing. It is only after 2 months that the result comes back from the clinical geneticist. Vajèn has MD, a serious and incurable condition. And with that, Hennie discovers that she has MD too.

Despite her loss, she holds onto the hope of a family, and after a few years she has a second daughter, Livèn, who is a miracle to them. Hennie and her husband have chosen not to have their second daughter tested for MD. They are now grateful to have a healthy child, while carrying the grief for Vajèn with them forever.