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

I only know this because Logan was born premature.  But the drug caffine 
stimulates the central nervous system to help them remember to breath.  They 
use this in the NICU for the babies until they get to a certain gestational 
age.  But with the trisomies I think their systems are slower to develop.  I 
had to fight with them at the NICU to continue giving it to him.  But every 
time they would stop he would start with the apnea's again.  But I agree 100% 
with every thing you are saying.  They do not attempt to save these children.  
They concentrate on the comfort care or preventing them from being born.  They 
told me at one point in time in the NICU to let Logan go.  I asked them if they 
would tell me that if he had cancer.  They said no they would not.  I think 
that told me so much on how they viewed him and would not see past the 
diagnosis instead of looking at him as a person.  Tina
 JMSK8RPRO@xxxxxxx wrote: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, 
pulmonary hypertension.




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

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