New Diagnosis
Congratulations on the birth, or expected birth, of your baby! The most important thing to keep in mind is that a diagnosis of Down syndrome is not as life changing as the fact that you have a new baby. And in many ways, your baby will be just like other infants. Every baby needs to be fed, held and most of all, loved. When you are ready, we will provide you with a new parent packet, which includes the most up to date medical information and research as well as resources available in Delaware for your child with special needs. A parent is available to meet with you and your family to answer questions and discuss concerns you may have. Experience shows that contact with peer families can be very beneficial. Through this type of support and encouragement, families become empowered to be the best possible advocate for their children.
Finding out that your baby is going to have Down syndrome can be a very emotional and confusing time. Please know that you are not alone! Many of our families have been through the experience of receiving a prenatal diagnosis, and they stand ready to share with you.
There is no right or wrong way to react to a prenatal diagnosis. We all are different in our life experience and current circumstances. Yet our common bond is that we all have hopes and dreams for our children.
Some expectant parents react by experiencing intense emotions at first: shock, dismay, fear, anger, etc. Please know that such emotions are a perfectly normal response. Many expectant parents enter a time of decision-making.
Some expectant parents consider adoption as an option. Many are quite encouraged to learn that there is actually a national waiting list of families wishing to adopt a baby with Down syndrome. If you would like adoption resources, we can provide those to you.
Other expectant parents are surprised and sad, but they make plans to welcome the baby into their lives. They gather as much information as they can and become determined to make adjustments.
No matter how you might be feeling, we are available to answer your questions honestly and do our best to describe the joys and challenges we have experienced in our own personal journeys.
Outreach
The DSA of Delaware’s Outreach Coordinators offer support and resources to expectant and new families of babies with Down syndrome in our area. To connect with our Outreach Coordinators, click here.
Request a Prenatal or New Parent Outreach Basket
A heartwarming message from 15 people with Down syndrome to a future mom.
Children’s Down Syndrome Clinic
The Down Syndrome Program at Nemours/Alfred duPont Hospital for Children provides a coordinated, multi-specialty approach to address every child’s medical, developmental and social needs — helping them reach their full health and developmental potential.
For more information about the Children’s Clinic, click here.
New Family Meet & Greets
In 2024, we are hosting New Family Meet & Greets at our offices in both Newark and Milton! We welcome anyone with a child under 3 years old with Down syndrome (or expectant parents!) to join us with their families to meet some other families from our organization. Each Meet & Greet will also have a kids’ music class with We Kids Rock!
Check out our Events Calendar for more details.
Perinatal Family Supports
The Down Syndrome Association of Delaware is honored to be partnering with Perinatal Prana to offer pre- and post-natal supports through a grant provided by Highmark Blue Cross Blue Shield Delaware.
This program is a collaboration of health professionals and support staff from the DSA of DE and Perinatal Prana. This will serve as a pilot program as we monitor impact. We encourage you to become involved if you are currently expecting a baby with Down syndrome or have a child with Down syndrome under the age of 18 months. For more information, click here.
Resources
- Explore our Perinatal program where we discuss various topic areas with prenatal and postpartum moms in a private and group forum.
- Down Syndrome Prenatal Testing and Information
- Understanding a Down Syndrome Diagnosis
- Down Syndrome Pregnancy – “Diagnosis to Delivery – A Pregnant Mothers Guide to Down Syndrome”
- Brighter Tomorrows – A web-based resource on receiving a diagnosis of Down syndrome either prenatally or at birth.
- Rising to the Occasion: Reflections on Choosing Naia [pdf] – by Tierney and Greg Fairchild
- BellaOnline: The Voice of Women – Prenatal Diagnosis: Down Syndrome – by Pamela Wilson, Special Needs Children Editor
Although it is very hard, there is a light at the end of the tunnel.
Allow yourself to grieve for the child you longed to have,
then allow yourself to learn about the child to come.
Talk with parents of other children with Down syndrome and
you’ll learn that the differences are not as great as you may have thought.
Most of all, love your child – your dreams for him/her may change but you can still dream.
Susan – Cranston, Rhode Island
Checklist
Out team has developed a comprehensive checklist that helps assist your family in navigating medical, recreation, social needs and more. This checklist lists area programs and resources you may be unaware of and want to explore further. We encourage you to review the list and contact us with questions. Click here to view. If you are a prenatal or new parent we have a condensed checklist at the top of the document.
Publications
The Down Syndrome Association of Greater Cincinnati created the New Parent magazine, “Expecting an Extraordinary Life….A New Parent’s Guide to Down Syndrome.” This new publication, includes stories from families, siblings and grandparents, an introduction to Down syndrome for new parents, information on medical issues, and wonderful full color photographs. Download the Publication (PDF)
Gifts – Edited by Kathryn Lynard Soper
Babies with Down Syndrome – Edited by Susan J. Skallerup
Road Map to Holland – by Jennifer Graf Groneberg
(the above books can be borrowed through our lending library- contact info@dsadelaware.org)
A new and expectant parent DVD was created by the DSAGC families to highlight the surprising and unanticipated joys of raising a child with Down syndrome. This 14 minute video, entitled, “The Journey Ahead…Consider the Possibilities” contains footage of their local families as they share their experience of family life with a child with Down syndrome.