About the Ebook
Within, you’ll find many of the questions we searched for answers to when our son was first diagnosed – how will this affect his development? What difficulties will we have with feeding? What treatment options are there? How will his time in NICU affect him long term? With research drawn from more than 160 medical sources, over 120 full color photos, experiences contributed by more than 25 PRS families, and my own personal journal entries from birth to NICU and beyond, this is a guide to PRS written for parents, by a parent.
FEEDBACK FROM PRS FAMILIES
If you just found out your newborn has PRS, read this book! It provides an extensive and thorough understanding of PRS without being overwhelming, while also providing relatable insight into the experiences you may have as a parent of a newborn with PRS while the NICU. This helpful guide is written by a mother who has lived it herself, and wants to help others by providing an easy to read educational tool. I absolutely wish I had something like this book for support and guidance when I was in the NICU with my PRS newborn!
- Shannon, PRS mom, USA
This book is what every parent with Pierre Robin Sequence should be presented with upon diagnosis. The book gives the options parents may be presented with surgeries to help their child, with ideas for families to mention to their providers, with real life results. It is so helpful to see other families’ progress and healing.
- Kelly, PRS mom, USA
This book is exactly what new PRS parents and families need to read. If only this was out when we first found out about PRS! Showing your own journey and providing all details, even the frustrating ones is exactly what is needed.
- Kiera, PRS mom, Canada
I’m Jess, a story teller and kind of “life journalist,” on a curiosity voyage to learn and record all I can about our world. Forever armed with my pen and my camera, I usually find myself drawn to documenting life through the wonderfully complex link between people, travel and food... ... except for the time I took off travelling to study medical journals and NICU life to write about my son’s rare medical condition.