New and Expectant Parents
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. The DSNetwork is here to assist you and your family members, whether you are having a baby or just had a baby with Down syndrome, as you welcome the birth of your new little one. We have a New Parent Mentoring Program that provides guidance for you and your family, connect you with another parent who received a diagnosis, either prenatal or at birth, make a personal visit and send you materials. Please know that we care about your family and we are here to help you at this sensitive time. Please contact us at info@DSNetworkAZ.org or give us a call at 480-759-9150.
Down Syndrome in the 21st Century
See the wonderful abilities and potential of people with Down syndrome. From infancy to adulthood, this 2008 video showcases individuals with Down syndrome living their lives to the fullest and doing things “not thought possible” — using sign language, swimming, giving a school report, dancing, holding a job and giving a speech. Made especially for new parents of a child with Down syndrome, this is for anyone who wants a current, accurate look at Down syndrome today. Produced by the Down Syndrome Association of Central Texas, www.dsact.com.
Children with Down Syndrome are often at increased risk for certain health problems. Congenital heart defects, increased susceptibility to infection, respiratory problems and obstructed digestive tracts occur with greater frequency among children with Down syndrome. 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:
♥ Choose a pediatrician who has experience with children with Down syndrome or who is eager to learn. 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.
♥ Obtain an echocardiogram.It is important that all children born with Down syndrome, even those who have no symptoms of heart disease have an echocardiogram in the first 2 or 3 months of life. Symptoms may present themselves as heart failure, difficult breathing or failure to thrive. The symptoms may not be apparent at first. Most hospitals have the capability to perform an echocardiogram. It is often most convenient to take care of this before leaving the hospital.
♥ Ensure that the diagnosis of Down syndrome is confirmed via chromosomal karyotyping.
♥ Have your pediatrician check for gastrointestinal blockage. Some signs of gastrointestinal blockage include vomiting or absence of stools. Again, the symptoms may not present themselves for a period of time.
♥ If your child has any feeding difficulties, consult a feeding specialist.
♥ Obtain a hearing test before leaving the hospital. Some children with Down syndrome have a hearing loss. With new testing procedures this can be detected easily in newborns.
Please note: This non-exclusive list is not meant to replace the care and advice of a qualified physician.
Visit our Resources page for more information about local and national resources, parent support groups and educational information.