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

Our Philip had double output right ventricle with a VERY LARGE VSD.  At 4 
months he was diagnosed with pulmonary hyper tension.  The doctors felt it was 
due to the heart defects.  We opted to do surgery at 6 months.  Surgery is 
considered a success due to the fact that his pulmonary pressures were normal 
coming off the bypass machine.  However, about 12-14 hours later his pulmonary 
pressure was spiking and he went into crisis with compressions and all.  They 
reopened his chest, but were unable to get him to respond to any medication or 
other treatments.  We let him go at that point.
 
I realize you did not give a lot of information, but the first question that 
came to my mind was:  does the child have pulmonary hyper tension?  From our 
experience and the information we received from the treating doctors was that 
he would begin turning blue within about 6 months and succumb to the 
hypertension (course they told us he would be blue from birth - what to they 
know, he never turned blue).
 
I have done some reading on the pulmonary hyper tension, but nothing further on 
the double output right ventricle with VSD.
 
In very simple terms, we were told that Philip survived with the defect that 
long without turning blue because his system got used to working with the 
defect.  When he would get stressed, his heart would shunt the "extra" blood 
back to the other side of the heart to counter the pressure of the stress.  I 
don't know but it sounded good and made sense at the time.
 
In all, I do not think the medical community knows why sometimes a child can 
survive with a major defect and another child with the same defect doesn't.  
 
I am currently working in a Surgical ICU where we get many heart patients.  I 
will see if I can get more information and pass it on to you.  The doctors are 
done rounding for today, but I am back tomorrow.
 
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

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