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Learning that your baby has Down syndrome can be very difficult to hear. This unexpected news may generate a wide range of emotions, concerns and unanswered questions. DSNetwork is here to assist you and your family members, whether you are having a baby or just had a baby with Down syndrome. Please know that we care about your family and we are here to help. Although there will be challenges, an exciting journey lies ahead, and DSNetwork is here to provide information and support along the way.
Provides guidance and individualized support for you and your family, along your journey.
Connecting with another parent who has a child with Down syndrome can be one of the most helpful resources a parent will have – it can help make their journey a little easier.
New parent packets provide helpful information, resources, facts, and encouragement for families who first receive the news that their child has Down syndrome.
“We were diagnosed at 18 weeks gestation and were so pleased when we found the DSNetwork one month prior to Joanne’s birth. DSNetwork represented a place to call “home” in a sense. It brought us together with others going through similar experiences, so we did not feel alone.” – Lisa, mother of Joanne
Being a parent in the 21st century can be overwhelming at times, regardless of the capabilities of the child. DSNetwork believes it is critical for families to receive accurate information, and know that raising a child with Down syndrome can be a fulfilling and rewarding experience. According to a study published in the American Journal of Medical Genetics by Dr. Brian Skotko, they found that the reality of Down syndrome is positive for a vast majority of parents, siblings and people with Down syndrome.
- Out of the 2,044 parents surveyed, 79% reported their outlook on life was more positive because of their child with Down syndrome.
- Surveyed siblings (ages 12 and older) – 97% expressed feelings of pride about their brother or sister with Down syndrome and 88% were convinced they were better people because of their sibling with Down syndrome.
- Study evaluated how adults with Down syndrome felt about themselves. 99% responded they were happy with their lives; 97% liked who they are; and 96% liked how they look.
Support & Resources
A Healthy Start
Down syndrome usually causes varying degrees of learning and developmental delays and associated medical issues. Fortunately, advances in medicine have rendered most of these health problems treatable. As with all children, you must take an active role in ensuring the best health care for your child. Some steps that we recommend be taken soon after birth include:
FINDING A DOCTOR
Choose a pediatrician who has experience with children with Down syndrome. DSNetwork does not endorse any health care provider. By contacting other parents, you can ask questions about how they selected a pediatrician for their child. You may also ask pediatricians for recommendations of colleagues with experience treating children with Down syndrome.
It is important that all children born with Down syndrome, even those who have no symptoms of heart issues have an echocardiogram in the first few months of life. An echocardiogram is a test that uses sound waves to check for heart conditions. About 50% of babies with Down syndrome have a heart defect. It is often most convenient to take care of this before leaving the hospital.
Every person with Down syndrome is unique and may possess some common physical characteristics at birth or none at all. A special chromosome test known as a karyotype needs to be performed before a positive diagnosis is made. This test is done via a blood sample and detects the number, shape and size of the chromosomes.
Children with Down Syndrome are often at increased risk for certain health issues. Early intervention can make a major difference in improving their quality of life. Because each child with Down syndrome is unique, treatment will depend on individual needs. In addition to heart health, other common tests at birth include thyroid, hearing and gastrointestinal issues. Check with your doctor and visit our resource pages.
You are not alone
Know that you are not alone. You have the opportunity to be part of a large caring community who welcomes you to reach out and connect with us to laugh and cry, to share information and help each other along a journey that at times is overwhelming, but is mostly wonderfully rewarding. When you are ready, we invite you to get in touch with DSNetwork.
ONLINE PARENT SUPPORT
Join the private Down Syndrome Network AZ chat group on Facebook to meet and connect with other families touched by Down syndrome in Arizona.
GUIDE FOR NEW PARENTS
View the National Down Syndrome Society (NDSS) comprehensive guide for new & expectant parents. NDSS is one of the leading organizations for all individuals with Down syndrome.
MEET OTHER FAMILIES & CHILDREN
Sign up to receive news on upcoming events in the ClubXtra group program where parents can meet and support other parents, play and interact with other children their age (0 -7 years old).