Coping with a diagnosis of Down syndrome

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Coping with a diagnosis of Down syndrome

Finding out that your child has Down syndrome can produce many conflicting emotions, such as shock, guilt, disappointment, optimism, despair, love, anger, and grief. Be aware that it is normal to have shifting emotions—they may change dramatically from one day to the next or even within a day.

If your fetus is diagnosed with Down syndrome early in pregnancy (using amniocentesis or chorionic villus sampling), you will have the option of terminating your pregnancy. For most people, this is a very difficult issue to consider. Talking with your doctor and a genetic counselor may help.

Your doctor or local hospital can refer you to community resources, such as Down syndrome support groups, to help you learn what to expect and how to care for your baby with Down syndrome. Support groups may be especially helpful in learning not only about the challenges of having a child with Down syndrome, but also the joys and positive experiences other parents have had. You may also find it helpful to meet and talk with families who have a child with Down syndrome. Talking with religious or spiritual leaders, genetic counselors, or loved ones may help you to deal with difficult emotions.

One of the greatest difficulties parents face is finding a way to tell family members and friends about their child's condition. If you do not learn that your baby has Down syndrome until after he or she is born, you will have little time to absorb the information before you need to answer questions from excited family and friends who are eager for news. The best approach in any case may be to simply state the facts, such as, "Our baby was diagnosed with Down syndrome." If you are not ready to talk about your child's condition beyond that, say so. You may feel able to tell only one or two people. If this is the case, consider asking them to share the news with others. Of course, there is no right or wrong way to tell people. Recognize that resources are available to help you.

A final diagnosis of Down syndrome after birth (with a karyotype) can take 2 to 3 weeks. Usually, the physical features of Down syndrome, the physical exam, results of previous screening tests (if these tests were done), and your medical history are enough for your doctor to give you a clear sense of whether your child has the condition. In any case, waiting for the formal diagnosis can be very stressful. Try to focus on caring and bonding with your newborn and getting the help you need.

Credits

Last updated:	August 09, 2007
Author:	Debby Golonka, MPH
Reviewed By:	Adam Husney, MD - Family Medicine, David Smith, MD - Family Medicine
Editors:	Susan Van Houten, RN, BSN, MBA, Pat Truman, MATC