What does a Down syndrome diagnosis mean for baby and family

Down Syndrome Explained

Down syndrome is a chromosomal anomaly that occurs in approximately 1 per 733 births in the United States. For some unexplained reason, an error in cell development results in 47 chromosomes rather than the usual 46. The extra gene material slightly changes the orderly development of the body and brain. About 5,000 babies with Down syndrome are born in the United States every year. The national population of individuals with Down syndrome is estimated to be 400,000.

About 80% of babies with Down syndrome are born to mothers under the age of 35. About 1 in 350 babies born to women over 35 have Down syndrome.

People with Down syndrome are more like typically developing individuals than they are different. There is great diversity within the population in terms of personality, learning styles, intelligence, appearance, compliance, humor, compassion, congeniality, and attitude. Favorite pastimes vary from person to person and range from reading, gardening and travel to baseball, music, and beyond.

Children with Down syndrome look more like their families than they do one another, have a full complement of emotions and attitudes, are creative and imaginative in play and pranks, and grow up to live independent lives with varying degrees of support and accommodations needed. Down syndrome will not be the most interesting thing about your son or daughter as they grow up. Remember that raising any child fills your life with unimaginable delight and difficulties. There are no longer limits on how far our children will go.

What Does It Mean For Baby and Family?

Having a baby is a major event. As expectant parents, we dream about what our child will look like and the type of person he or she will be. We hope and expect our child to be perfect, beautiful, and successful. When a person is born with Down syndrome, no one is really prepared to deal with the immediate emotional impact of a child with a disability – not parents, friends, relatives, nor the hospital staff surrounding the parents.

Common Feelings

At the moment of diagnosis, most parents only have a vague idea of what the term “Down syndrome” means, but a great deal of anxiety about what it might mean.

Shock, panic, despair, disbelief, hopelessness, guilt, shame, rejection, and pain – a pain so deep and searing that parents sometimes have difficulty describing it – are common reactions when parents find out their child has Down syndrome. We are afraid that we will not be able to handle the situation. There are so many questions without answers and so much uncertainty about the future. We wonder if our life will ever be light or carefree again, if there will be laughter again, if we will be able to manage this overwhelming responsibility the rest of our lives, or if there is light at the end of the tunnel. We might ask “How could this happen to us?” “What did we do to deserve this?” “What will we do?”

Grief for the loss of the expected child is a common feeling among some new parents (people around us expect grief but experienced parents come to realize this grief is really based on ignorance). People go through the grieving process at different speeds. Many will revisit the process over and over again. The process consists of (in no particular order): Denial, Anger, Bargaining, Depression, and then, finally, Acceptance. Each stage lasts varying amounts of time. What you will also come to experience is joy – even though you may not feel this initially it will come. Experienced parents can tell you this is true!

Many of us have misconceptions about words like “developmentally delayed,” or “mentally retarded.” The proper words to describe this are cognitive disability. We may have had limited or no contact with people with Down syndrome in the community and may not realize that there is a wide variation in mental abilities, behavior, and physical development in individuals with Down syndrome. On standard IQ tests, our sons and daughters with Down syndrome most often score in the mild to moderate range of cognitive disability (formally called mental retardation).

These tests do not measure many important areas of intelligence, and you will often be surprised by the memory, insight, creativity, and cleverness of your child. Exceptional social intelligence is a common attribute of children with Down syndrome. In fact you must realize that you are not obligated or required to have your child’s so called “IQ” tested (please recognize that the results of an “IQ” test could be used against your child). The high rate of learning disabilities in students with Down syndrome sometimes masks a range of other abilities and talents. In adulthood, many people with Down syndrome hold jobs, live independently, and enjoy recreational opportunities in their communities. Each individual has his/her own unique personality, capabilities, and talents.

Effects on the Family

Parenting is both a rewarding and challenging task for most parents, and being the parent of a child with a disability adds more challenges and possibly more rewards as parents celebrate achievements that are taken for granted for typically developing children. Research shows that the majority of families with children with Down syndrome lead ordinary lives. This does not mean that families do not have additional demands and challenges to cope with. It means that the majority of families find the resources to meet the additional needs of their child and lead happy ordinary family lives themselves. There are no more marriage breakdowns than in the rest of the population (and there is some indication that breakdown is less likely). Brothers and sisters will usually be lifetime friends, advocates, and supporters for the child with Down syndrome. Benefits of sibling relationships can be seen, whatever the relative ages of children, if positive relationships are encouraged.

Talking to Friends and Family

Well-meaning friends and family often fail to understand the great potential that children born with Down syndrome have and the joy they bring to their families. Upon hearing the news that your new baby has Down syndrome, they may not know what to say. Consequently, they may resort to clichés or sentiments of pity. Some people may even avoid contact, because they simply don’t know what to say. Most friends and family will take the first cue from you. Many parents handle this by creating a joyful birth announcement that includes the diagnosis of Down syndrome as additional information – just as one would the length, weight, or time of birth.

As your child grows and develops, caring family members and friends will look upon him/her more and more as your child and as a person, rather than as a child with Down syndrome.

Getting Support

Having someone who is able to listen and understand is extremely important for new parents. Often, merely seeing another parent of a child with Down syndrome who looks "okay" is living proof that one can survive such a stressful situation. An experienced or veteran parent can be more sensitive to the feelings involved, offer more appropriate support, and can help the new parents in ways that are not possible for professional counselors or doctors. They can also tell you that you will learn to thrive and not just survive! Used as a resource, veteran parents can share their experiences and give invaluable suggestions about many aspects of the child's care and future development. They can help to reassure the new parents that the feelings they are experiencing are perfectly normal and quite natural. Fears about the future can immobilize parents. Veteran parents visiting with new parents can give an invaluable gift — the first light of hope.