Birth Defects: Get Help, Get Connected

Four Helpful Sites

While this is not an exhaustive list, listed below are some references you may want to investigate as possible resources for your center to offer clients with a poor prenatal diagnosis.

  • It’s a Mom’s World – Special Needs provides support and information for a mother or couple whose child is diagnosed with special needs.

    Samuel Armas -- 21 weeks in utero (FoxNews.com)

    samuelaramas

    Samuel Armas -- 9 years old
    (FoxNews.com)

  • Prenatal Partners for Life is “a group of concerned parents (most of whom have or had a special needs child), medical professionals, legal professionals and clergy whose aim is to support, inform and encourage expectant or new parents. We offer support by connecting parents facing an adverse diagnosis with other parents who have had the same diagnosis. We have many resources such as adoption agencies with clients waiting to adopt and love a special needs child should a parent feel they could not care for them.”

  • IsaiahsPromise.net is “a group of parents who knew early in our pregnancies that our babies had severe or fatal birth defects. Each of us, for various reasons, continued the pregnancy. It's a difficult and very personal decision. We know the devastation, confusion, heartbreak and loneliness. We can't change your circumstances or make decisions for you. But we can offer support, friendship and experience.”

  • BeNotAfriad.net is “an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within this site are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The benotafraid.net families faced the same decision and chose not to terminate. By sharing our experiences, we hope to offer encouragement to those who may be afraid to continue on.”

Free Symposium

The First Annual Conference on Medical Advances in Prenatal Diagnoses was hosted by the Council on Poor Prenatal Diagnoses & Therapeutic Intervention in January of 2012.

The conference brought together professionals from many different specialty areas, including genetic researchers, ob-gyn physicians, developmental pediatricians, hospital nursing staff, medical genetic counselors, and medical students. Other participants and guests included peer ministry providers, social service support professionals, advocates for persons with disabilities and public policy specialists.

Julie Armas and her son, Samuel, both spoke at the conference, testifying to the wonderful life Samuel has lived, even with a prenatal diagnosis of spina bifida. The unforgettable 1999 picture of Samuel’s tiny finger reaching out of the womb and grasping his surgeon’s finger was printed in several newspapers worldwide, including USA Today. Samuel turned 13 in December of 2012.

You can view this full-day conference free of charge here.