[tri-med] Very Sad News from David and Raeline

I received this, this morning.


Hi Catherine.  I have bad news.  Claire passed away on March 14.  Her lungs
were what failed.  We are very sad.  The hospital did all they could.  We
are comforted by friends and relatives.  They have done an autopsy on her
lungs.  Maybe they will find something that will help others.  We don't know
the results yet.  They would not take any organs because she was T-13.  (Her
heart doctor, who saw Claire every six months, was one of the intensivists
in ICU.  She had said that if Claire makes it, Claire would never have to
see her again because her heart was performing so well.)  They would have
taken her corneas and heart valves if she had not been on the ventilator.

Thanks for your help in locating resources for Claire, and for your concern.

We discovered in November that Claire had something called a chiari
malformation.  Among other things, it restricts the flow of spinal fluid
back into the brain.  The reason I'm telling you this is because there are
behaviours associated with this condition.  (There are also physical
effects.)  You mentioned that Monika's parents are struggling with
behaviours.  Now I know that there is a danger that parents of a child (us)
may tend to think that their child's problems may be the same as other
children's problems, so I won't put too much weight on it, but it would be
worth checking into.  Aside from the headaches and other pains which of
course influence behaviour, especially in a non-verbal child, is something
called paroxysmal rage.  Monika's parents may want to check it out.  We wish
we had known about this years ago.  An informative website is
http://www.chiaricare.com/.  Monika's parents are welcome to contact us by
e-mail or by phone.  Our phone number is (deleted)

David Smith (davidmsmith@xxxxxxxxxxxxxxx)
No virus found in this outgoing message.
Checked by AVG.
Version: 7.5.519 / Virus Database: 269.21.8/1338 - Release Date: 3/21/08
5:52 PM

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: