Please fill out this form and DSIA will connect with you! Thank you and Congratulations on your baby! 💜💚
When families receive a new diagnosis of Down syndrome, each family is given a package full of resources including our parent guide containing information on Down syndrome and messages of hope and inspiration, DSIA’s original books featuring local families, and much more!
The principle of early intervention is to provide appropriate therapies for children to minimize delays and maximize their development.
Alta California Regional Center: Alta coordinates – and in many cases provides – Early Intervention services for children with developmental disabilities, including Down syndrome. Alta intake in English: 916.978.6249; Spanish: 916.978.6647.
Early Start is the California program responsible for ensuring that early intervention services to infants and toddlers with disabilities and their families are provided statewide in a coordinated and family-centered system. CLICK HERE for more information.
Diagnosis Guidelines
Parents will ALWAYS remember how they received a diagnosis.
After 20 years, mothers can still recall with nearly 82% accuracy the first conversation about Down syndrome. Here are some resources to help you deliver a diagnosis of Down syndrome.
Prenatal diagnosis of Down syndrome: How Best to Deliver the News
Postnatal Diagnosis of Down Syndrome: Synthesis of the Evidence on How Best to Deliver the News
Physicians Need to Offer Up-to-date Information about Down Syndrome to Expectant Couples to Inform Decision-Making: A physician should “offer parent-to-parent contact and information about local and national support organizations”.
Does your health care team need a workshop on how to give a diagnosis of Down syndrome? We can help! Please contact us!
What is it really like to welcome a baby with Down Syndrome into the family?
Having a Brother or Sister With Down Syndrome: Perspectives From Siblings: This study asks brothers and sisters about their feelings and perceptions toward their sibling with Down syndrome.
Self-Perceptions From People with Down Syndrome: This study asks people with Down syndrome (Ds), ages 12 and older, about their self-perception so that their information could be shared with new and expectant parents of children with Ds.
Having a Son or Daughter With Down Syndrome: Perspectives From Mothers and Fathers: This study asks parents who have children with Down syndrome how they feel about their lives so that such information could be shared with expectant couples during prenatal counseling sessions.
Referrals & Services
Next Steps…Where Do We Go From Here?
First things first, get to know your baby and welcome him/her into your family.
Here is a short list of things you want to immediately:
- Make sure your baby has been scheduled for an echocardiogram. This is usually performed at the hospital before the baby goes home.
- Schedule an appointment with your pediatrician to discuss any medical concerns.
- You might want to meet with a genetic counselor to discuss chromosomal test results.
Next Steps should include:
- Contact Alta California Regional Center to get your baby started with early intervention services (English: 916.978.6249; Spanish: 916.978.6647).
- Contact the Down Syndrome Information Alliance. We can help you get connected with other families, and help guide you to the resources you need.
Support & Advocacy
As you begin caring for your new baby, you might find it helpful to be in contact with another family of a young child with Down syndrome. Having experienced many of the emotions you are now facing, they might be able to offer a listening ear and kind words of support and understanding. A Parent Mentor can also help you make connections within your community to other families. They can answer many of your questions and be a great resource for you.
DSIA’s Parent-to-Parent Program matches you with a Parent Mentor with similar experiences as your own. If you would like to be matched with a Parent Mentor, call DSIA’s Support Line at 916.842.7175 or e-mail support@downsyndromeinfo.org.
Publications & Research
We are sure you are experiencing a range of emotions as you adjust to the diagnosis of Down syndrome. Receiving a diagnosis that your baby will have Down syndrome can be overwhelming.
These resources are intended to help new or expectant parents learn more about Ds and provide accurate and up to date information about their baby’s future. We hope these resources will help families understand how having a child with Down syndrome can enhance the family.
If you did not receive a DSIA Down Comforter Package, please contact us so that we can send you one. You can also access some of the materials here:
Other Resources
Your Baby Has Down Syndrome: A Guide for New Parents
Down Syndrome Pregnancy is a wonderful resource which walks expectant couples through their pregnancies and provides many resources along with the ability to connect with other parents who have walked in your shoes.
The Down Syndrome Diagnosis Network shares resources and parent diagnosis experiences.
New parents also find this “Welcome to Holland” story very helpful in articulating how they feel about a diagnosis.