I'm with the Trisomy TRIS Project. I just thought it may be helpful to you to look at our facebook. https://www.facebook.com/#!/TrisomyTRISproject
We are current studing family support and lifespan of children with Trisomy 18, 13, & 9. While I'm not promissing any miracles, as long as you are able to find a proactive doctor the survival rate for an infant with Trisomy 18 has been increasing each year. Our site also will help get you in touch with other parents who know exactly what you are going through.