Thank you so much for getting back to me...I will pass on what you've shared and welcome anymore info you may find ....any information will be welcomed, I am sure.... Blessings. ThereseAnn mom to Natalia t13 http://www.livingwithtrisomy13.org/album14.htm >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 Building ___ooOOoo__ Rainbows www.trisomyonline.org Families Helping Families On-line