Understanding a Down Syndrome Diagnosis

To download a free copy of “Understanding A Down Syndrome Diagnosis”, which contains accurate and up-to-date information about Down syndrome along with helpful resources, visit Lettercase.org through the button below. Lettercase provides digital and print resources for genetic conditions. CLICK HERE.

New & Expectant Parents

It is never easy to learn that your child has or may have Down syndrome. This unexpected news may generate a wide range of emotions, concerns and unanswered questions. The Down Syndrome Association of Jacksonville is here to offer you support and guidance. We encourage you to learn all you can about Down syndrome and to embrace hope for a promising future.

The DSAJ would like to provide you with information and support to help you begin this journey. We have materials and books available to send you, and we are available to answer any questions you may have. Please check out our Lil’ Stars group, geared towards newborns to 5-year-olds.

Please contact us at 904.353.6300. You may also email our Executive Director, Debbie Revels. If you call after business hours, please leave a message and we will return your call as quickly as we can. We look forward to hearing from you.

Down Syndrome Pregnancy

www.downsyndromepregnancy.org is a resource which walks expectant parents through their pregnancies, provides many resources and offers connections with other parents who have walked in your shoes.
Congratulations – you’re going to have a baby!

A letter from a mother of a beautiful daughter who happens to have Down syndrome

Like me, you had some genetic testing done. I was in my early 40’s and knew I was at risk for having a child with Down syndrome. IF our baby had Down syndrome, we wanted to be prepared. We already had three children (13, 11 and 6 years of age). This was an “unexpected” pregnancy, but we were all thrilled. The results of my amniocentesis came back. Our baby had Down syndrome. We were devastated. Yes, we knew I was “at risk”, but we never expected a positive result. The chances were so slim! How could it happen to us? We experienced the many stages of grief: tears, anger, fear, depression, anxiety, and agony. We thought our lives would never be normal again. I couldn’t stop the tears from flowing! I couldn’t talk about it! I couldn’t sleep! I overate! I dreaded the birth and even more so, the future. But, when the tears and the fear finally began to subside, we remembered the reason for the amniocentesis – preparation. With the help of professionals (which might include: an obstetrician, developmental pediatrician, genetic counselor, pastor or priest, etc) and many organizations and support groups including the Down Syndrome Association of Greater Cincinnati, we gathered much information. We became knowledgeable in medical considerations and treatment, developmental delays and interventions, therapeutic and community programs. With the help of family, friends and our faith, we gathered the strength and courage needed to accept and provide for our child with special needs. As our baby grew and developed in utero, and as we explored the literature and started planning for the future, our feelings of fear and disappointment began to change. Hope and possibilities began to emerge. Certainly, love was always there, but it began to grow and blossom and become contagious. We wondered what “Sarah” would look like. Would she look like the other kids? What kind of a personality would she have? Would she have medical problems? What kind of delays could we expect? Would we be able to deal with her “special needs”? Would she have friends and be accepted into the community? Many of the answers became obvious. As she has many of the same genes as the rest of the family, of course she would resemble us. The other kids had great personalities, why shouldn’t she? Many of the possible medical complications could be treated and/or resolved. With the correct groundwork, guidance and intervention, special needs could be addressed and delays minimized. With our commitment and love, she would be encouraged to reach her full potential and with the assistance of family, friends and neighbors, she would be accepted and integrated into the community. On September 24, 2005, three weeks early and amid joy, anticipation and some fear, Sarah arrived. She looked perfect and beautiful to Mom and Dad. We welcomed her into our hearts and home and as with any child, we knew the rewards would be great. Sarah is a treasure beyond measure. She has filled our lives with wonder and delight, achievement and unconditional love. She is more like a typical child than unlike one. The road will be rough at times. There are going to be delays and disappointments along the way, there are going to be obstacles and hurdles to overcome, not just with Sarah, but with all our children. I wish you the best of luck and may you truly enjoy, cherish and love this new addition to your family!

Helpful Links

National Down Syndrome Society

Information for Prenatally Diagnosed Families 

Active discussion board with Moms of babies with Down syndrome

Free Resources about Down syndrome