Caring for Special Babies & Children/Adults
Support Organisation for Trisomy 13/18 - (Patau's/Edward's Syndrome)



We had to say goodbye before we even met


We had to say goodbye before we even met

By Irene Teague  (Author), Grainne Knox (Illustrator)

Is now published and available to purchase on Amazon

Caidain was diagnosed with Edwards’ Syndrome Trisomy 18

Written through the eyes of our oldest daughter Erin-Rose

Irene has asked SOFT to highlight the book





A resource helping to support families affected by pregnancy loss

We Had To Say Goodbye Before We Even Met: A book for children who have lost a sibling through pregnancy or early baby loss


We had to say Goodbye before we even met is a true story about a family who have experienced the tragic and heart-breaking loss of their baby, Cadain during pregnancy. This beautifully written and illustrated book, is told from the perspective of sibling, Erin-rose, who was so excited about having a new baby brother or sister. In this poignant yet uplifting story, the family are given the devastating news that the baby has a fatal condition and would not survive long after birth. The author who is also a Clinical Psychologist has had personal experience of pregnancy loss and was inspired to write this story in the hope this book will help with explaining what happened and with normalising the grief related thoughts and feelings that children may have. There is also a helpful section for parents with tips for supporting children and themselves during this traumatic time. This book would be invaluable to anyone supporting children affected by pregnancy loss, still birth or early baby loss.


“The idea for this book was inspired by the death of our 2 babies, Anna who was stillborn al 18 weeks in 2017 and Caidain who was stillborn at 33 weeks gestation in 2019. We had 2 children who were very aware of the pregnancies and we struggled to find appropriate resources 10 help explain the loss in a child friendly way. I work as a Clinical Psychologist and think stories are a fantastic resource for children with many benefits.

During my pregnancy with Caidain, we knew at around 23 weeks that Caidain was not going to survive. He was diagnosed with Edwards’ Syndrome which is a severe chromosomal disorder. Anna was diagnosed with Down’s Syndrome at about 16 weeks gestation.

As parents, we wanted to protect our children from this horrific news but knew that we couldn’t and that added to our pain. We were reeling from the news and worried about how and when to tell them and how they would react. Like us, they were very excited and looking forward to meeting the baby.

There was a period when we as parents knew our baby wouldn’t survive but didn’t feel ready to tell the children, however il was very painful to hear their excited hopes for when the baby comes and it just felt so wrong to continue with the silence.

We were so relieved when we told them. It felt like a great weight had been lifted. It enabled open, honest but difficult conversations about what would happen when the baby was born.

This story is our experience of losing Caidain and written through the eyes of our oldest daughter, Erin-Rose who was 8 years old at the time of diagnosis. Our story and contents may not be in keeping with your family’s belief system. I appreciate that every family may deal with this experience differently

In writing this book my sincerest hope is to bring a little comfort to this very painful experience. I also hope that it helps your child 10 know that other children have experienced similar and have had similar thoughts and feelings to them. I also wanted to bring hope, that after terrible tragedy, the intense feelings of grief lessen and they can still think of their brother or sister in spirit and remember them in special ways.

I believe as parents, you carry your child’s grief as swell as your own but understanding your child’s grief and how they can be supported can make the load a little easier. I have included some suggestions at the end on this topic.

I hope you and your child find this book useful and supportive in helping with conversations about the very painful and tragic reality of pregnancy and early baby loss.”

We had to say goodbye before we even met     By Irene Teague  (Author), Grainne Knox (Illustrator)