Who are we?

We are a group of parents who have experienced the heartbreaking loss of children diagnosed with acrania, anencephaly and other neural tube defects.

I, Vincent, a father residing in France, took the initiative to establish this group. It stems from my personal journey as a parent who had a precious daughter with acrania. She was my first and only child.

Why did we create this website?

Similar to many of you, I was taken aback by the diagnosis. The weeks leading up to my daughter’s passing were filled with immense challenges. Now that my daughter left this world, I feel compelled to document the information I gathered during this journey and share the experiences I went through. Additionally, I have gathered valuable materials from other parents who have walked a similar path.

Our primary aim is to offer parents facing a similar situation a deeper understanding of the our children’s condition. We hope that you can make well-informed decisions.

It’s important to note that we operate independently and do not receive any financial support from individuals or institutions.