Statment by Sarah - Isabella's Mam

Sarah Nugents little girl Isabella had a peroxisomal disorder - a genetic, degenerative condition - and lived for 54 days

I'm Isabella's mam, my Isabella had a peroxisomal disorder and lived for 54 days. Our babies were not incompatible with life. They lived, they live, they loved and they were absolutely adored. Isabella was my daughter and I treasured every second I had with her, she taught us all so much about life.

By saying our babies are incompatible with life, by using such a cold and heartless phrase to describe our children, you are dehumanising them, devaluing their little lives and causing unnecessary extra heartache to their families. These three words tell parents that society has already given up on our child, and that we should too. I had 54 days with Isabella.

She was my daughter and that was her lifetime. Her lifetime was spent surrounded by love. Read our stories, our babies, Isabella, Sean, Kathleen rose, Lilly joy, have inspired more love, hope, compassion, friendship and family unity, than many who live long lives do. We are asking you to listen to us, we have learned first hand, the joy that these babies bring and the value of the memories of our time spent with them. We need support to be able to let these babies write their own stories, be it two hours, two weeks, eight years.

We want the value of our children's lives to be acknowledged by ending the use of the term incompatible with life. We want babies to be given every chance to love and be loved. Isabella was given her own room, we were given a bed to lie with her, her family could come and go as they pleased. We were given time, and we were given support.

The only reason this all happened was luck, we were lucky with the amazing nurses we got, who went above and beyond for us, and in doing so, showed us how much they valued her. I know from hearing many stories that this is not standard practice. That is why we are asking for perinatal hospices to be set up.

To provide this kind of environment, one that supports parents and families to take care of their baby, while making the very most of whatever precious time they have with them. Thank you


Sarah Nugent - mam to Isabella Nugent Fitzpatrick