Posted: Thu Mar 05, 2009 10:25 am
Post subject: CCHS & Tracheostomy
My 6 week old baby has recently been diagnosed with a rare condition called CCHS. There are only 200-300 known cases in the whole world. The condition means that when he goes to sleep his body does not automatically breathe. This will mean that he needs to be ventilated for his whole life whilst asleep. We are just about to go back to Great Ormond Street Hospital so Finlay can have a tracheostomy so that he can be easily ventilated whilst small.
I would be interested to hear from anyone who has a child with a tracheostomy or CCHS. It would be nice to know that we are not alone.
Posted: Thu May 07, 2009 6:28 am
Post subject: CCHS patient and mom
Hi there, I'm not sure if you know about this website but its called cchsnetwork.org and there are extensive articles online with information on CCHS. There are about 1,000 of us in the world it is very rare but that does not hinder any of us. There are so many of us that go on to college and eventually have children of our own. I am 23 years old and my daughter McKenna also has CCHS she was born last year May 5th. We both have ventilators for when we go to sleep, we are slowly weaning McKenna off the vent during the daytime but since she is unpredictable as to when she will fall asleep for now she is on it all day. Just know that there is a whole community of people out there that are available for any questions you may have.