Saturday, 18 March 2006

Raphael was born

He came into the world with raspy, gurgly breathing (stridor), a crooked mouth and a funny ear but that didn’t stop us from instantly loving him. A bit of suctioning by the nurse did not improve his gurgle.

He added to our little family nicely:
  • Paul and Annie Bartlett
  • Faith Bartlett (3yo)
  • Zachariah Bartlett (2yo)
  • and now Raphael Bartlett (0yo)
After a few days in hospital there was a small concern that he wasn't starting to gain weight correctly. His suck was strong but he seemed to choke a lot and get tired quickly while on the breast. Follow up nurse visits after leaving hospital resulted in a gradual increase in concern over his weight gain. Our other children were slow weight gainers too so we weren't that concerned, but it took ages to feed Raphael and lactation herbs didn't seem to be helping the weight gain. If anything he would become overwhelmed by the milk and turn away to stop drinking.

Here is a photo showing his wonky ear and crooked mouth. Normally he is extremely passive but we managed to catch him in this moment of rage when he was 4 days old. Check out the creases on his head!


I am writing this blog about my son Raphael and specifically about the genetic disability that he has, called CHARGE syndrome (or CHARGE association).

I will soon publish a long chronological order of events about the problems that Raphael (my son) has been faced with since birth up to and beyond when he was diagnosed with CHARGE syndrome.

After then I will publish events as they unfold about the challenges that he faces in his life.

The entries in the blog are likely to be a mixture of factual summaries and long winded stories.

I hope that this blog will be used for four things
  1. To help me remember all of the components of his medical problems and how they interact with his development.
  2. To communicate with friends and family about what is going on with my boy. Of course I don't mind to talk about it, but this will be a place where the most up-to-date and accurate information will be published.
  3. To provide a small source of information about what parents of CHARGE syndrome children can do for their CHARGE children in my home city: Hobart, Tasmania, Australia.
  4. To get it off my chest!
The two best websites (and contact information) about CHARGE has come from the US and Australasian CHARGE Syndrome organizations: