Sharing the NewsA Diagnosis of Down Syndrome

Misconceptions About Down SyndromeTimeworn stereotypes, myths and unfounded biases underwrite prejudices of all kinds. Such is true for Down syndrome. Those ideas have persisted for so long that, tragically, they are often taken as facts.

We offer a new perspective:

It is thought that babies with Down syndrome often present with intractable, life threatening medical problems. The truth is, which some babies with Down syndrome have serious cardio-vascular or intestinal issues, the vast majority may be corrected with what are now relatively routine surgical techniques. After the first year of life, most children with Down syndrome are healthy and have a life expectancy approaching the norm.

It is a common misconception that children with Down syndrome cannot learn. In fact, children with Down syndrome can and do learn. They learn to read, write and do math. They are often avid students, much like their peers, making honor roll and graduating. Increasingly, they succeed in postsecondary education and, yes, even graduating from college.

It is often thought that parents and families will not be able to find community support to bring up their children with Down syndrome. This is simply put, not true. In almost every community in the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Many believe that people with Down syndrome impose a terrible burden on their families. In fact, any parent will tell you that having any child is sometimes a burden. But like all children, those with Down syndrome are cherished mem-bers of their families and mature into productive members of their communi-ties. Most give back far more that they ever receive.

The Down Syndrome Association of Minnesota is happy to provide “Down Comforter: A Parent’s Guide to Down syndrome” to parents and medical providers free of charge. Please call or visit our wesbite to recieve copies.

Down Syndrome Association of Minnesota656 Transfer Road, St. Paul, Minnesota 55114

www.dsamn.org • (651) 603-0720

Sharing the NewsIt comes to you to inform parents their child has Down syndrome. How you deliver this news is crucial – for both parents and child. The manner in which you communicate the facts of this diagnosis is as important as the facts themselves. We offer these suggestions in the best interest of parents and their children.

Changing DreamsParents are dreamers. The news you must deliver will alter those dreams. It will often shock, sometimes leaving parents to grieve the loss of their original dream. This is natural.

You have a unique, wonderful opportunity. You can replace parents’ initial fears with accurate information and perhaps new aspirations for their child.

Who Delivers the NewsPlease do not delegate the responsibility of delivering this news to anyone but yourself. The news will set in motion decisions and can affect families for the rest of their lives. Please make no exceptions. A referral to a genetic counselor is standard practice.

How to SharePlease do not say that raising a child with Down syndrome is without challenges. Conversely, also let parents know that raising a child with Down syndrome can also be very rewarding.

Please, just stick to the facts. We cannot predict the future for any of the children we raise; but we can have hopes and dreams for our children – the same is true for a child with Down syndrome. It is important that you inform parents in person, and ideally with both parents present.

Positive versus NegativeParents report that, too often, the news came in a negative context – “I am sorry to tell you . . . ” “I have bad news . . .” and so on. Please do not use these value judgments. Start hopefully. Unless medical facts suggest otherwise, start by telling the parents that mom and the child appear healthy. If the news is unexpected, you can frame it that way. Then discuss the diagnosis or screening test results. Please use person first language: a baby with Down syndrome, not a Down’s baby or a Down syndrome baby.

Go SlowHaving communicated facts, please pause and allow parents time to absorb the information. Acknowledge that this is not what they expected and that it is a lot of information to process. Most patients will be shocked. Some may not hear another word. Others may seek information and ask for many questions. Please be sensitive to all types of responses. Have the facts readily available for those that want them. Please be certain to access recent research.

Help Them Get ConnectedParents need time to assimilate the news and, if they feel they have choices, need time to acquire information.

Explain all of the options available to parents and help them to connect with resources. Don’t rush the parents in their decision making.

The Down syndrome Association of Minnesota is a valuable resource to parents. We offer access to current information on all aspects of the syndrome. The most important resource we offer your patients is connections with parents who have received a diagnosis and are willing to share their experiences.

Experienced parents offer two essentials. First, they know better than anyone what your patients are experiencing. Second, they are surprisingly objective. They know from both personal experience and their training how terribly important it is to stick to the facts. They will not pressure parents rather serve as a resource by sharing and empathizing with your patients. Above all, they are honest and caring.