Never heard of Pierre Robin Sequence? Not a big surprise. Here's the story of one little boy born with this rare genetic issue.
The Story of Jairus
On March 30th, 2001, our first child was born with Pierre Robin Sequence at McMaster Children's Hospital in Hamilton, Ontario. This is my account of his first few months of life.
This was my original blog. After a couple years, I decided to devote it completely to an account of our experiences with our son's genetic disorder, Pierre Robin Sequence. The main characteristics of PRS include a cleft of the soft palate and an underdeveloped jaw. These two issues require significant medical intervention at birth, and sometimes result in long term problems. In about 85% of cases, PRS is actually a symptom of an underlying syndrome, like Sticklers or Distal Arthrogryposis. If not, PRS is considered isolated and after surgery and a few years' passage of time, the child usually recovers completely with few signs anything had ever been wrong.
Jairus has not been so fortunate.
As blogs are usually posted in backwards chronological order, Jairus' story had been difficult to read. Therefore, I've set this up with a book template. To your right are the links in order of when they occurred. At this time, you'll have to keep coming back to this page in order to access the next chapter.
The story is not complete. I'm still working, from time to time, to transfer the account from my journal. Right now, his hospital time is mostly accounted for, which is March 30th, 2001 until May 28th, 2001.
It's my hope that a family newly dealing with a diagnosis of PRS for their child might find this and benefit from our experiences.