[tri-med] Re: Anyone with experience with a double outlet right Ventrical with a VSD????

Therese,
 
I talked with one of the Cardiovascular Surgeons that I work with.  He is not a 
pediatric surgeon, but suggested looking on the Internet or at the library for 
information on heart conditions.
 
He did agree that if surgery was to be done, it should be done before the 
pulmonary hyper tension sets in.  Again, with our situation (trisomy 18 and the 
heart defects), the pulmonary hyper tension was diagnosed at 4 months.  The 
surgeon that did do the surgery on Philip stated the next t18 he would want to 
do the surgery at around 12 weeks.  From my understanding, this would be the 
appropriate age with or without the trisomy diagnosis.
 
I would also suggest looking into pediatric cardiologists and pediatric 
cardiovascular surgeons.  Don't let the cardiologist stonewall the family into 
not seeing a surgeon.  The sooner a surgeon is involved, the better the chances 
are of getting the surgery at the right time.  You may want to have them check 
where the closest Children's Hospital is to them.  I do not know where they are 
located, but we went to Riley Hospital for Children in Indianapolis Indiana.
 
Surgery is a HUGH decision at the young age of the child (as most of us know).  
This is one decision they will have to think about with great detail.  The 
window of opportunity is very small and we often to not have much time to make 
such an important decision.  Especially one that we will have to live with the 
rest of our lives.
 
Please pass on to them my families thoughts and prayers.  If they would like to 
contact me, please give them my email address.  I do not check my email on a 
regular basis, meaning daily.  I do check it at lease once a week.  Please have 
them put in the subject line something about the VSD or I may not respond.  I 
use this email basically for Tri-med and erase everything else.   
 
Jackie, mom to Tina 14 yr, Tony 12 yr, Philip (Full T18) ^!^ 9/20/02 @ 6 mo
 
 
-----Original Message-----
From: Therese <therese@xxxxxxxxxxxxxxxxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Tue, 28 Jun 2005 10:49:58 -0700
Subject: [tri-med] Anyone with experience with a double outlet right Ventrical 
with a VSD????

Hello,
I friend of mine had a grandchild with a

double outlet right Ventrical with a VSD

Anyone on this informative list familiar with this????

Of course my friend is distraught....The child is 4 days old. Not a 
trisomy...Just a worried grandma...Thought I would see if any of our 
experienced parents are familiar with this with the many heart 
problems our kiddo's have.

thanks for your input, I will certainly pass it on, and if you would 
like to be of support to the parents or grandma let me know too as I 
pass your experience on...thank you... in advance!!!

Blessings,
ThereseAnn mom to Natalia t13

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


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

Other related posts: