It’s certainly not the book I ever thought if write, but I’m very grateful to have had the opportunity to write it and maybe help some other families out along the way.
And I know it’s not the food and travel adventures I usually write about, but I wanted to give it a tiny space on the blog here, because
a) I wanted the families who need this book to have every chance to find it, and
b) I’m really proud of it 🙂
How it came about is that my son was born with a rare medical condition, Pierre-Robin Sequence, in January 2019. There’s very, very little information available about this condition, and after briefly falling down the Google rabbit-hole trying to find answers, I got frustrated and decided to take matters into my own hands. I spent 14 months researching medical websites and journals, contacting and interviewing other PRS families, and typing up my own journal entries chronicling our time in NICU and beyond. The result is this book…
About the Book
So you’ve been told that your new baby has a medical condition called Pierre-Robin Sequence. OK. I know you’re scared right now, because I’ve been there. Finding helpful information online was almost impossible, which only made it scarier. That’s I why I wrote this book.
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