RAISING JOEY

Prenatal Diagnosis Resources

Helping to promote awareness and helping to educate families about prenatal diagnosis of Down syndrome, along with other prenatal diagnosis, has become something I truly feel deserves attention. After I received Joey’s prenatal diagnosis of Down syndrome, many doctors didn’t give out postitive information on Down syndrome, everything seemed to be negative. I was also reminded of my option of terminating my pregnancy over and over again (which for me, was NOT an option). Doctors need to focus more on the positives and not the negatives.

When I was pregnant with our daughter, Leah, certain doctors tried pushing me to get genetic testing done again to see if this baby has Down syndrome, when I refused, I was told that I “needed to know the consequences of my actions” in not getting genetic testing done. Doctors need to be educated on proper ways of giving prenatal diagnosis to expecting parents and also how to talk to parents who have already have a child with Down syndrome or any other genetic abnormality.

There are so many different ways to help support families who receive a prenatal diagnosis of Down syndrome (Trisomy 21). As I find new resources online I will post them on this page.

*If you have recieved a prenatal diagnosis of Down Syndrome or are a new parent to a baby who has been diagnosed, please feel free to email me at raisingjoey21[at]gmail.com.

Prenatal Diagnosis Online Resources

• The CT Down Syndrome Congress’s- Holland Committee
• Be Not Afraid
• Brian Skoto’s Homepage & Research
• Continuing Pregnancy With a Diagnosis Of Down Syndrome: A Guide For Parents
• Down Syndrome: For New Parents
• Light At The End Of The Tunnel- Down syndrome Association of Orange County
• Prenatal Diagnosis: Down Syndrome
• Prenatal Partners For Life
• The Rights of Expecting Parents
• National Down Syndrome Society- Presenting a Diagnosis of Down Syndrome For Health Care Professionals

If you have received a prenatal diagnosis, a wonderful way to find support groups and meet new families is to contact your local Down Syndrome Organization click here to see a comprehensive list of Local & State Down Syndrome Organizations.

Message Boards are a wonderful way to talk to other parents who have chidren with Down syndrome. Some of the best advice I’ve gotten about Joey has come from other parents not doctors or therapists! Don’t be scared or nervous to reach out to others!!   

• Trisomy 21, Online Community

• Down Syn Forum

• Uno Mas

• Life’s Journey With Down Syndrome

Books

• Gifts, Mothers Reflect On How Children With Down Syndrome Enrich Their Lives. Edited By Kathryn Lynard Soper. Foreword by Martha Sears, RN.
• Common Threads: Celebrating Life With Down Syndrome. By Cynthia Kidder & Brian Skotko.

*If you have a website or book that would be helpful to expecting parents who have recieved a prenatal diagnosis that I don’t have listed, please share it with me. Email me at raisingjoey21[at]gmail.com.

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