[tri-wings] Re: hospital education re trisomy ??? -sorry longer

There is a recurring theme in many of our stories. We all loved all  children 
no matter what disabilities they had, and we all tried to do what was  best 
for each one of them individually. In many of our cases we were thwarted by  
the very people we entrusted to help us to achieve our goals for our child, the 
 
medical professionals. 
 
The feelings of exasperation, hopelessness and fear overwhelmed us and I am  
sure so many others. I have said this before, but, being a midwife I am used 
to  fighting the typical "medical model" to get what is best for each 
individual  woman in labor. Yet, this process completely threw me and was 
almost more 
than I  could bear. Just the same as everyone else. 
 
We all are left wondering, what if, if only and 1000 other things. What  
could have been done differently if we had known something then that we know  
now. 
So many of us want to change this for others, but we cannot find a way to  do 
this. The only way to change medical standards is by medical  studies. 
Because of the lack of medical studies and outcome studies,  things have not 
changed 
with increased ability to fix the problems in our  children. The studies that 
most geneticists, pediatricians, and neonatologists  are quoting are from 
small samples, usually based on death certificate data  and therefore on 
children 
who have died. This data is very often  incorrect. In my daughter's case, she 
did not die from Trisomy  18. No child ever has. She died from congestive 
heart failure, (which  we now know was caused by a collapsed lung, possibly 
brought on by the  ventilator settings being to high, while she waited two 
weeks 
for them  to decide to do surgery) caused by Double Outlet Right Ventricle. She 
had  no other physical problems (kidneys, intestines, etc.). In her original  
death certificate the cause of death was listed as Trisomy 18. I made them  
change this to the real cause of death which they then listed as: cardiac  
arrest, due to congestive heart failure, due to Double Outlet Right  Ventricle, 
due 
to Trisomy 18. The main reason I did this is for those studies  that people 
do. This is something simple you can do, if you know the cause of  death of 
your child to make sure, when statistics are being gathered, they are  
correctly 
gathered. I have not found hardly any studies on living children and  the two 
heart studies that have been done, have helped to get surgery for those  
children that need it. The more studies there are, the more that will change.  
Interestingly, even though they told me it was impossible to operate on a child 
 
my daughter's size, and impossible to correct her defect, i know a surviving  
child who weighed the same as my daughter at birth with the same exact defect  
whose heart was fully repaired a week or so after birth. She is now almost 5 
and  has never needed a single heart medication. When I have told doctors this, 
they  just do not believe me. The more we do the better. 
Another thing everyone on this list can do is to enroll in the TRIS  study if 
you do not know what that is, email me and I can send you the  information. 
The more information that the medical community has about the  realities of 
life for children with T13 and T18 the better their lives  will become. 
 
My personal goal has been to raise money for more research for t13  and t18. 
Together, me and my husband, along with some other friends we have  met along 
the way, have raised just over $34,000.00 towards research,  during two 
events. One of the things that we helped to fund, and we plan to  continue to 
fund,  
is the TRIS project. Our next event is May 6th here in  Naples Florida. 
 
 
 
If anyone wants to help, participate or just know more about what we do,  
please email me.
 
Bess  


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

Other related posts: