Did I do anything wrong to cause my baby to be born with Down syndrome?
Nothing you did or thought caused your child to have Down syndrome. All individuals who have Down syndrome were born with extra chromosome material in their cells. This is a result of an error in cell division, in either the egg or sperm, prior to conception or very soon afterward. At this time it is not known why the extra genetic material causes Down syndrome.
Do I need a “special” pediatrician to care for my child with Down syndrome?
Your pediatrician for routine care does not need to be a "Down syndrome specialist". It is more important for you to choose a doctor you are comfortable with and who is willing to learn with you. American Academy of Pediatricians site for Down syndrome.
What should I be doing to help my baby?
Soon after birth, early intervention specialists from Babies Can’t Wait, including physical, occupational, and speech therapists, will guide you in how to promote your baby’s progress. Make an appointment at the Emory Down Syndrome Clinic and talk to the multi-disciplinary staff there. Talk to other parents who live near you. They are often the best source of information for people and programs that can help maximize your child’s potential.
How do I explain Down syndrome to my other children?
We recommend a terrific book, We’ll Paint the Octopus Red, by Stephanie Stuve-Bodeen for preschool and early elementary aged children. The story is easy to understand and there is a question and answer section in the back that addresses many concerns that a young child may have. There are often sibling workshops offered for older brothers and sisters. The NDSC national convention each year includes a sibling track.
Are there special programs for children with Down syndrome?
There are programs available for people with Down syndrome in all stages of development. These include early intervention (Babies Can’t Wait, which starts at birth), preschool programs, free appropriate public education in the least restrictive environment, therapy, post-secondary school options, employment training, and a wide array of social and support programs.
What is included in these special programs?
Most incorporate speech, physical, occupational, and music therapy along with educational approaches. The goal is to lead the individual with Down syndrome toward greater independence and to give them the opportunity to develop their individual potential. With the right supports, most individuals with Down syndrome have a great chance of becoming integral members of their community.
What about family members?
Parents, siblings, and other family members are encouraged to participate in support groups and organizations that will help them to understand the needs and potential of their family member with Down syndrome. The Down Syndrome Association of Atlanta is one of these organizations.
Do people of all ethnic groups and of all economic levels have Down syndrome?
A child with Down syndrome can be born to anyone, regardless of age, race, socio-economic status, or where they live. Down syndrome occurs in approximately one out of every 691 births in the United States.
Are people with Down syndrome different from the rest of us?
People with Down syndrome are more like average persons than they are different. First and foremost, they are individuals with their own personalities. They have unique talents, characteristics, abilities and disabilities, just like the rest of us. They are brothers, sisters, husbands, wives, friends, and neighbors. They work in banks, schools, offices, and restaurants. They would like you to know “We’re More Alike Than Different.”
I’ve heard that people with Down syndrome don’t live long — what is the life expectancy?
In 1929, the average life expectancy was 9 years, but with awareness, better health care, and community resources, many individuals with Down syndrome now live into their 60′s. As medical care continues to advance, the life span of many individuals will be even longer.
Is there a cure for Down syndrome?
No, there is no cure. The extra chromosome will remain in cells throughout the person’s life. Early intervention, high quality health care, good educational opportunities, appropriate nutrition, and many other interventions make a huge difference in the individual’s life, however.
If I have a child with Down syndrome, will I have another?
Not necessarily, but advanced age is a risk factor. The type of Down syndrome your child has is also a factor. A Robertsonian Translocation could indicate a familial origin. Genetic counseling is available to answer questions like this for particular individuals.
Will my child walk, talk, etc.?
Unless there is another condition that is present, almost all individuals with Down syndrome do learn to walk and to talk.