A patient Story - Zoé

On 26 February 2010, both Zoé and Prader-Willi Syndrome entered our lives. We had to adapt very quickly to this very special little human.

When she was born, Zoé had very severe hypotonia, which prevented her from moving, communicating and feeding.

A gastric tube was very quickly set up to allow Zoé to eat, and it remained in place for over two months. However, we worked with the medical team to come up with some creative solutions so that Zoé could drink a few centilitres from her bottles: stimulation, special equipment (such as the curved bottle), etc.

Despite all these adjustments, Zoé did not have the strength to eat properly, it required too much effort, and she always fell asleep.

It wasn’t until she was three months old that Zoé left hospital, as she finally had the energy to swallow from her bottles, though very slowly and with difficulty.

It’s from the first hours of a baby’s life that the bonds are created between a child and its parents. For us, this bonding was cut off as soon as she came into the world because we felt really helpless and powerless to help our baby, she was basically a rag doll who was constantly sleeping. The emotional bond took a long time to establish… So that which brings joy to childbirth was taken away from us. We therefore adapted, as best we could, so that everyone could deal with this unexpected birth experience as best as possible.

Nathalie and Nicolas, Zoé’s parents