Keep Your Chin Up: The book on Pierre-Robin Sequence
As the sun set on January 14th, 2019, our lives were changed forever; Jasper was born. A few minutes later, our new family's life was turned upside down with the news that there was something wrong with our son. The following hours are still a blur, but the following day it was confirmed that our son was born with a condition called Pierre-Robin Sequence. What??! Turned out the Pierre-Robin Sequence (or, PRS) is a pretty rare condition, and the information available on it is rarer still. As you do when you're confronted with something new and scary, we turned to Google and found information that was mostly outdated, worst case scenario type stuff, that only scared us even more.
I became increasingly frustrated that there was no information available to help families like ours, and decided that instead of complaining about it, I'd get to work; I spent the next 12 months researching a book about PRS. It's not a medical textbook, and it's certainly no replacement for your medical team's advice, but I hope it will be something that can offer some answers and hope to other new PRS families. Keep Your Chin Up is a combination of medical research (gathered from hundreds of medical journals and websites) and personal information (including interviews with dozens of other PRS families around the world, as well as my own journal entries from the time we spent in NICU with Jasper) that I'm hoping will give some answers to new PRS families as well as validate how they might be feeling throughout the initial months after their diagnosis.
If you're a new PRS family, welcome to the club! I promise, things will get easier, as you may read in those interviews in Keep Your Chin Up. Many families offered advice on how to get through it, but the advice that was overwhelmingly repeated from most families was:
Advocate for your child - no, you're not the doctor or nurse or other specialist, but you're the parent, which means you know your child better than anyone else in that hospital!
Look after yourself!!! You cannot pour from an empty cup, and having a sick baby will highlight that like nothing else. Eat well, get some fresh air, sleep... you can't help your baby if you're exhausted and run down.