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

Heartfelt sympathy to Claire's family at this sad time.

At 04:58 AM 23/03/2008, you wrote:
>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
>
>
>
>
>--
>No virus found in this incoming message.
>Checked by AVG.
>Version: 7.5.519 / Virus Database: 269.21.8/1337 - Release Date: 
>20/03/2008 8:10 PM

Jocelyn, loving Nanna to Tess with Trisomy 18, age 11 years
. 

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

Other related posts: