Below is a message from the Department of Health Services Division of Birth Defects and Infant Disorders.
Are you, or someone you care for, living with a heart defect, cleft lip, spina bifida, or other condition that you were born with? Your journey matters. Sharing your story could help provide support or information for other families.
CDC is collecting stories of individuals living with birth defects and their families to share as part of our communication outreach for Birth Defects Awareness Month (January 2024). The theme for this year’s awareness month is “Every Journey Matters.”
We would like to create graphics and videos that tell the story of your journey and connect your experiences to some of our key awareness topics, as applicable:
Care coordination: Can you describe how you access and receive care for your condition? How has coordination of care benefitted you or your family?
Healthcare/medical transition from pediatric to adult care: How did you prepare yourself or your loved one? What tips would you have for other families?
Independence (going to school, getting a job, some other milestone): What are some examples of how you encourage or build skills toward independence?
Community support/resources:
- Connecting with other families: How has connecting with other families provided you support or comfort?
- Support from partners, family, friends during and after pregnancy: What type of support did you receive during pregnancy? What additional support would have been helpful during that time?
- Importance of inclusion within your community: Can you share an example of when you felt fully included at school or in your community?
Parenting a child with special healthcare needs: What are you excited about for your child and his/her future? What do you wish more people understood? What advice do you have for other family members who are caring for a child with a birth defect?
Mental health: Is mental health a concern for you or your child? How do you combine taking care of your or your child’s mental health along with any physical health plans?
CDC may not be able to share all stories we receive. Before any content is posted online or via social media, we will share products we develop for your review. We will also ask you to sign a waiver that gives CDC permission to share your pictures and story. If you are interested, please contact Carly Goodroe, Health Communication Specialist at CDC with a brief description of your story by October 23, 2023.