If you have just received a Down syndrome diagnosis, you are probably experiencing a whirlwind of emotions. Learning that your baby has Down syndrome is an overwhelming and emotional experience for most parents. You may initially feel confused, frightened, angry, saddened, and/or isolated. Remember that your baby is a baby first and is not defined by his or her diagnosis of Down syndrome. Right now there may be a lot of emphasis on how your baby may be different and the potential medical problems he or she may face, but no one can predict future challenges so try to take things one day at a time. Over time, you will find that children with Down syndrome are more alike than different from other children.
The good news is that you are not alone in your journey. Let us help. Let us provide resources and education. Let us connect you to other parents who have been in your shoes. To receive a welcome bag and to be connected to a parent to receive support, send an email to outreach@GRADSA.org or call 812-301-2235.
- Basket Delivery to Hospitals
- The opportunity to talk with other parents about your concerns and questions.
- A chance to meet other children with Down syndrome and their families.
- Information and resources about Down syndrome.
- Assistance locating helpful medical and early intervention services.
- Referrals to local and national resources, including books, websites and support groups.
- Support to families who have a child that will undergo heart surgery or a child that is in the NICU.
- Access to fun family and community events including Mom’s Night Out
The following resources are intended to help new or expectant parents learn more about Down syndrome 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 entire family.
- “Understanding a Down Syndrome Diagnosis” by Lettercase: Provides a library of resources that provide accurate, balanced, and up-to-date information for new and expectant parents learning about a diagnosis of Down syndrome and other genetic conditions. These resources contain the latest medical and developmental information about people with Down syndrome as well as local and national resources, pregnancy options and helpful visuals and graphics. This booklet has been reviewed by all the major medical organizations involved in expectant mothers’ health.
- “Welcoming a Newborn with Down Syndrome” book: This book offers support and accurate, reliable information to the new parents of a baby with Down syndrome. The book covers topics like breastfeeding, adjusting to a diagnosis, preparing siblings, understanding medical issues, preparing for the future, and, most importantly, it shares diverse stories about the daily lives of families whose children have Down syndrome at different ages.
- Down Syndrome Pregnancy Program: Down Syndrome Pregnancy is a program administered by the National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute. It provides honest, compassionate, medically-reviewed, and informative support for those preparing for the birth of a baby with Down syndrome.
- Down Syndrome Diagnosis Network (DSDN): The mission of Down Syndrome Diagnosis Network (DSDN) is to connect, support and provide accurate information to families with a Down syndrome diagnosis
- National Down Syndrome Society (NDSS): NDSS is the leading human rights organization for all individuals with Down syndrome.
- National Down Syndrome Congress (NDSC): NDSC is a national Down syndrome organization that hosts an annual conference each year and has other resources for families.
- Dear Future Mom is a heartwarming video message from 15 people with Down Syndrome to a future mom.
- “If I Could Go Back” video: Parents of older children discuss what they would have told their former selves and new parents about what life would be like with a child who has Down syndrome. Warning…you’ll need some tissues for the video!
- Adoption: We understand that not all birth families feel they are able to meet the needs of children with Down syndrome. The National Down Syndrome Adoption Network provides information to birth families who may be seeking alternatives to parenting as they prepare for the arrival of their child. The network currently has over 200 registered families, each waiting to adopt a baby with Down syndrome. You may contact them directly at (513) 213-9615.
Content adapted with permission from the Down Syndrome Medical Interest Group of Montgomery County.