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)

  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.

While there are thousands of different birth defects, the most common are heart defects, cleft lip and cleft palate, Down syndrome and spina bifida. Approximately 150,000 children are born every year in the United States affected by one or more birth defects, according to the American Pregnancy Association. 

The CDC reports that one in every 33 babies (about 3 percent) is born with a birth defect, and that birth defects are one of the leading causes of infant deaths, accounting for more than 20 percent of all infant deaths. Causes vary, including the use of alcohol, street drugs, and prescription drugs, being exposed to various infections such as cytomegalovirus or sexually transmitted infections. Genetic conditions can also be passed from parent to child.

Information about Specific Birth Defects

The CDC has great information on many birth defects which you may find useful in your center at the following links:

• Anencephaly
• Cleft Lip / Cleft Palate
• Congenital Heart Defects
  • Atrial Septal Defect
  • Hypoplastic Left Heart Syndrome
  • Tetralogy of Fallot
  • Transposition of the Great Arteries
  • Ventricular Septal Defect
• Down Syndrome
• Encephalocele
• Gastroschisis
• Hypospadias
• Omphalocele
• Spina Bifida
• Upper and Lower Limb Reduction Defects

Cytomegalovirus (CMV) Disease: The Congenital Disease Mothers Don't Know About

The following information is also found at the CDC site:

CMV is the most common congenital (present at birth) viral infection in the U.S. Each year, about 5,500 (1 in 750) children in this country are born with or develop disabilities that result from congenital CMV infection. More children have disabilities due to this disease than other well-known congenital infections and syndromes, including Down syndrome, fetal alcohol syndrome, spina bifida, and pediatric HIV/AIDS.

CMV is spread from person to person by close contact with body fluids, such as blood, urine, saliva, semen, vaginal fluids, and breast milk. Once CMV is in a person's body, it stays there for life. Most people who become infected with CMV have mild, flu-like symptoms or no symptoms at all; the exceptions are infants with congenital infection or people who have weakened immune systems.

For pregnant women, sexual contact is a common source of CMV infection. Limiting sexual partners and practicing safe sex may reduce the risk of catching CMV.

Another common source of infection for pregnant women is contact with the urine or saliva of young children who are infected with CMV and are shedding the virus.