[tri-med] Re: We Need Volunteers For A Rare Trisomy Parent Advocacy Panel...

Thank you for sharing the story of your son Philip. (I have a son named
Philip also, but he's a healthy and normal 2 year old.) My daughter,
Phoebe has much in common with your son. She is 5 1/2 months old and has
a large VSD. We just came from the cardiologist's office today,
coincidentally because we are looking into having her VSD repaired and
are monitoring her pulmonary hypertension to see if she would be a good
candidate for surgery. I wasn't going to intervene at all with her
condition, simply let nature take its course. But when I saw her slowly
dying in front of me, I just had to do something. I took her to the
emergency room at Children's Hospital of Phila. last week where they
determined that she had congestive heart failure. I wasn't even
considering open heart surgery, but after hearing about it from her
doctor, I realized I had many misperceptions about it. It's not as bad as
I had thought and contrary to my belief, they are actually willing to do
it on a Trisomy child. I will be scheduling an appointment for her
pulmonary catheter as soon as possible so they can determine the status
of her pulmonary hypertension. From there we will know if she ought to
have surgery or not. I'm hoping so much that she'll be okay enough to
undergo the operation. Right now she's tethered to an oxygen machine 24/7
(and therefore, so am  I). I want her heart fixed so that at least she
won't be dependent on that anymore. But even if she doesn't make it
through, at least I'll know that I have done everything within my power
to save her precious little life, as you had with your son. --Stephanie
Konik, mom to Phoebe, full T-13 & Philip, 2 1/2 .
On Wed, 29 Jan 2003 07:22:31 EST JMSK8RPRO@xxxxxxx writes:
> Jackie and  I want to advocate for these kids.  Our little Philip 
> died of 
> pulmonary hypertension after open heart surgery last September at 
> age six 
> months. 
> 
> The medical profession, especially cardiology, assumes that T-18s 
> are going 
> to die and won't treat.  We feel that is a self-fulfilling prophecy. 
>  We 
> should treat T-18s, when the family wants it, and they can live.  
> The poor 
> statistics are more a product of lack of experience.  There are 
> benefits.  By 
> learning how to treat large VSDs and the associated pulmonary 
> hypertension or 
> congestive heart failure, other kids will benefit.  We didn't 
> realize before 
> Philip's operation how little the medical field knows about 
> pulmonary 
> hypertension. 
> 
> Another big killer is central apnea.  This wasn't a problem for 
> Philip, but 
> what an important issue this is for many families of otherwise 
> healthy kids, 
> as well as T-18 and related disorders.  
> 
> We would also like to see some kind of respit care for those whose 
> insurance 
> doesn't provide it.
> 
> The medical profession is still in the 1950's in treating T-18s.  
> They have 
> made great strides in T-21s.  We need to wake up and begin the same 
> journey 
> with T-18 and related genetic disorders.  These kids are a blessing 
> and a 
> gift to everyone.
> 
> There is a dangerous move in medicine to cut costs and regulate.  We 
> need to 
> be aware of this movement and its potential.  There will be more 
> pressure 
> applied to pull the plug on genetic disorders.  Our feeling is that 
> the 
> family should decide and the medical profession should provide the 
> information and reasonable treatment.  We didn't find out about 
> Philip's 
> pulmonary hypertension, until too late, because all his 
> cardiologists just 
> assumed that we don't operate on T-18s.
> 
> Larry Greenbank
> 
> Jackie and Larry Greenbank, Tina and Tony and Calico cat in Fort 
> Wayne-- 
> family to sweet little saint Philip James, died at six months, T18, 
> VSD, 
> onary hypertension.
> 
> 
> 
> 
>                   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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