Are there support groups for parents of ectopia cordis babies?

Question

Our 12 wk. fetus was diagnosed with Pentalogy of Cantrell and Ectopia Crodis, we are looking for a support group with parents that have been through this trying decision making. We are desperatley seeking anyone who has experienced these. Our baby has also been diagnosed with Edema around his head. We need some HELP!!

Answer 1

You might try posting this question in the parents/babies category, there may be other parents experiencing this. Make sure you get a second opinion on the diagnosis as well, there have been cases where the baby is perfectly healthy and the test was wrong. As for support groups, have you tried the following:

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support
P.O. Box 925
Oxford, NC 27565
Tel: [phone]
Fax: [phone]
Email: [e-mail]
Internet: http://www.cherubs-cdh.org

Genetic Alliance
4301 Connecticut Avenue NW
Suite 404
Washington, DC 20008-2304
USA
Tel: [phone]
Fax: [phone]
Tel: [phone]
Email: [e-mail]
Internet: http://www.geneticalliance.org

Real Hope for CDH (Congenital Diaphragmatic Hernia) Foundation
1171 Vermilion Road
Vermilion, OH 41089
Tel: [phone]
Email: [e-mail]
Internet: http://www.realhopeforcdh.com

My best wishes go with you and your family regarding this decision.