[tri-med] Re: heart surgery

Hi Pam and Darrell, 
I had gone throughthe same situation just a couple of months ago.  My baby girl 
Maia (T18) was born on June 22, 2004 with a large VSD and a PDA.  The only way 
to get her breathing on her own and a chance at getting her home was to perform 
open heart surgery.  We fought with our neonatologists who said statistics show 
that only 10% of T18 babies live past their first year and those that do have a 
poor quality of life.  I shot back that it was doctors like them who were 
creating this cycle because parents hear their kids don't have a chance from 
doctors so they decide not to do anything.  If our kids are given a chance 
maybe the stats would change.  They also said that Maia would not walk or talk 
or know who we were b/c of T18.  I told them I could give them phone numbers of 
parents who could tell them otherwise.  Columbia Presbyterian in NYC refused to 
do surgery on Maia.  They had done the same surgery in 2003 on a T18 baby but 
our cardiologist at the time said the nurses and
  docs who took care of this baby didn't agree with what they were doing so 
they did not want to do it again.  This baby who had surgery is now 1 year old 
and although she is small - she is beautiful, healthy, and breathing on her 
own, no g-tube, trying to roll over, and lets her mom know when she wants her 
by screaming!  But to those doctors I guess that is not a good quality of life.

Anyway Children's Hospital in Philly did agree to do the surgery.  They made 
sure we knew that fixing her heart might not help with her breathing.  They 
also told us that b/c of her size (she was under 4 lbs and only 6 weeks old)she 
would have a hard time with recovery and might not make it.  We knew that this 
was Maia's only chance and we couldn't let her just go without trying to "fix" 
what we could.  Unfortunately my baby girl did not make it.  She fought so hard 
and was doing well for about four days after surgery.  They tried to slowly 
take her off of her meds after surgery and started feeding her but it was too 
much for her system and she crashed.  We gave her a couple of days to see if 
she could fight back but after three days we knew it was time for her to go.  
We were at peace with our decision that day knowing we gave her teh best chance 
she had.             

I know we wouldn't have done it differently although I wish with my whole heart 
the outcome would have been different.  The feelings I have now are so much 
better than the feelings I would have had if I just let her go without any 
intervention.  WE have to give our babies a chance especially if the 
intervention they need would not be questioned if the docs were dealing with a 
"normal" baby.  The cardio that did help us did tell me as we were deciding 
that I was only talking to parents who had good outcomes from surgery and that 
I should find parents whose babies didn't make it because maybe they regretted 
their decision.  I can tell you I do not!  I gave my baby girl all that I could 
and then I gave her to God where she belongs!

I hope this helps - I fought for four weeks with docs to get her the surgery.  
If you need anything please let me know.  I've heard all the excuses from the 
docs!  Good luck Tyler I will be thinking of you!
Jessica     


----- Original Message -----
From: "pam&darrell" <bifman@xxxxxxxxxxxx>
Date: Sun, 26 Sep 2004 07:51:15 -0400
To: <Tri-Med@xxxxxxxxxxxxx>
Subject: [tri-med] heart surgery

> hi everyone.
> we are about to meet with cardiologists this week to discuss heart surgery 
> for tyler's vsd.  he is 2 months old now.  his heart is getting worse.  in 
> our area, heart surgery is done at toronto sick kids hospital.  it is their 
> policy not to perform heart surgery on children with trisomy.  as this is 
> tyler's most serious medical problem, we tend to believe the doctors are 
> mistaken.  the word policy has begun to sound like a word that includes 
> statistics, not human beings.  we want to show them why they are wrong.
> i would really appreciate it if anyone who is willing would send a photo and 
> a description of their child listing what they can do , how they function and 
> do have quality of life. i have already "met"a few of the kids through their 
> parents so i know they live worthwhile lives-doctors don't seem to get that.  
> i want them to see it. since tyler has t13 i would really like to know if any 
> t13 kids have had heart surgery and what the outcome is.  i would also like 
> to know about the t 18 kids, too.  darrell and i are very angry that living, 
> breathing human beings are being lumped into a catergory that seems to be 
> labelled "discard".  any help anyone can give would be awesome.
> 
> another thing i would like is to find the canadians on the list if they would 
> not mind.  i want to find out how they have navigated through our health care 
> system.  quite frankly, we are baffled. 
> 
> i know i am asking a lot from one email, but everyone on this list seems 
> willing to step up and help change things for special kids.
> 
> much appreciatiom,
> pam, hubby darrell, tyler t13 mosiac, kira 2
> elora ontario
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 

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