[tri-med] Re: Denise - would some letters from parents help?

Also, try the Texas Children's Hospital website.  I would bet that if contacted 
the cardiologist would give professional opinions.  I know Dr. Charles Fraser 
is very sure of what he does as a heart surgeon and he has many years 
experience.  You can mention Annette if it will help you get the medical 
intervention you need for your child.
Annette

--- On Thu, 6/18/09, Nanci Grimes <nancii@xxxxxxxxxx> wrote:

From: Nanci Grimes <nancii@xxxxxxxxxx>
Subject: [tri-med] Re: Denise - would some letters from parents help?
To: tri-med@xxxxxxxxxxxxx
Date: Thursday, June 18, 2009, 9:01 AM

Just like Annette, Soleah was born with an ASD, VSD, PDA, & PFO - had open 
heart surgery at 3 months also and no longer needed meds (maybe from 6 months 
after the surgery) - she did end up needing a pacemaker as a result of the 
surgery (a known risk from the patch that was sewn in to patch her large VSD)
Would it help if some of us put together a letter to take to your doctor?  I 
would be happy to do so.  We could tell about our children medically and 
personally and also list where we are from and what procedures they had done.  
I'm open for contact from anyone.

Let me know . . . I'll do something and send it to you privately.

Nanci

--- On Wed, 6/17/09, Annette Oseguera <tri18412@xxxxxxxxx> wrote:

From: Annette Oseguera <tri18412@xxxxxxxxx>
Subject: [tri-med] Re: (no subject)
To: tri-med@xxxxxxxxxxxxx
Date: Wednesday, June 17, 2009, 2:53 PM

Annette was born with an ASD, VSD, and PDA.  She had open heart surgery when 
she was three months old.  At eight months, she no longer needed any heart meds.
Annette



--- On Mon, 6/15/09, DENISE DEVLIN <denisedevlin@xxxxxxxxxxxxxx> wrote:

From: DENISE DEVLIN <denisedevlin@xxxxxxxxxxxxxx>
Subject: [tri-med] Re: (no subject)
To: tri-med@xxxxxxxxxxxxx
Date: Monday, June 15, 2009, 5:04 AM

Hi Susan
Thank you for your reply.  Unfortunately I live in Northern Ireland so finding 
a good doctor has proven very difficult.  I am still trying and staying as 
hopeful as I can but my son was also diagnosed with a heart defect 2 weeks ago 
so every piece of news we get just makes matters worse and so far the doctors 
locally have all refused him any help to survive. They are so sure he will not 
be born alive that I am increasingly angry with them all.  I have to believe 
they are wrong and they dont know everything and we will get to spend some time 
getting to know him.

Thanks again

Denise 




________________________________
From: G&S <hardyboyz@xxxxxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Sunday, 7 June, 2009 6:37:50 AM
Subject: [tri-med] Re: (no subject)



> My unborn son has been diagnosed with trisomy 18 and a congenital 
> diaphragmatic hernia and I have been told nothing can be done, he will not

> be incubated to keep him alive and there is no hope. I can find no details

> of similar cases and wondered if anyone could give me any information.
> Many Thanks
> Denise>>>>>>>>>>>>>>>>>.



Welcome Denise and so sorry to hear of you sons diagnosis.  While T18 is not
necessarily fatal when they are looking at that with the diaphragmatic
hernia they are less likely to be grim. What you need to do is find a
neonatologist at a level 3 hospital that believes these kids can live. Sadly
to say if you are in Ontario Canada that is not likely ( I only say this re
recent discussions with a neonatologist re the care of my deceased daughter
who had t 18  ) if they can fix the defects these kids can live!  Rebecca
was 14 1/2 years before she died and we loved her every minute  !  she also
had a profound effect on many and was actually a maid of honor at a wedding!



Susan Mom to Rebecca T18 M 6/6/91-5/2/06 and Mark ADD/LD age 16


  

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




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


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




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

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