Down syndrome is a genetic condition which is the most commonly occurring chromosomal abnormality. It occurs in 1 out of every 691 births and affects people of all races and economic levels. Typically, babies receive 23 chromosomes from their mother and 23 from their father. A baby with Down syndrome, for unknown reasons, will have three copies of the 21st chromosome instead of two. That is why Down syndrome is also called Trisomy 21. Every cell will contain 47 instead of the typical 46 chromosomes. There are also two other forms of Down syndrome which are quite rare – mosaic and translocation. This extra genetic material will affect a baby’s development, however, the baby has also inherited many physical and personality characteristics from his/her parents as well. A definitive diagnosis can only be made with a karyotype, which is a visual display of a baby’s chromosomes. In the United States there are approximately 350,000 individuals living with Down syndrome. These individuals are active, vital members of their families and communities. A life with Down syndrome is a life well worth living.
My child will die young, as individuals with Down syndrome do not live longer than the mid 20′sReality: – This is simply not true. Individuals are living well into their 50′s and even longer, now that proper medical care is being given to treat heart or other life threatening conditions. Many individuals are capable of employment, living independently, and enjoy many hobbies and activites. See our T21 individuals in the news.
Your child will sufferReality – Again, this could not be further from the truth. Many people in the world require corrective surgery. If your child needs surgery for any reason, the medical care given to individuals with Ds is wonderful. You can expect your child to do beautifully, and continue to thrive. While as many as 30-50% my have a heart condition, only approximately 5% will require open heart. The care of that 5%, by qualified pediatric cardiologists, is remarkable. The remaining 25-45% will have other less invasive procedures, or just be monitored. The cardiac care these days is absolutely amazing!! All other corrective surgery is also incredible. Any medical conditions can be treated today, unlike years ago when treatment was unknown. With proper medical care, individuals go on to live happy and wonderful lives!
The physicians have told me that my child’s Down syndrome is worse than other cases.Reality – This is simply impossible to tell in utero. Or even right at birth for that matter. Even children with many surgical needs have gone on to do amazing things. Karen Gaffney is an amazing example of an individual who needed much corrective surgery, and has gone on to do amazing things. She is not unique, this happens all over the world. I have met soo many families who have seen their family member through medical care, and the individual goes on to do beautifully in every way.
The physicians have told me my child has a mild case of Down syndrome.Reality – While there are many different abilities for individuals with Down syndrome, a physican can not tell in utero or at birth, how a child will fare. Most instances where an individual has a more difficult time learning or behaving, is indication of a dual diagnosis. Typical children have this exact possiblity. If a child needs corrective surgery, that does notmean they will have severe developmental delays. Individuals with Down syndrome benefit from loving homes, early intervention, inclusive education, appropriate medical care and positive public attitudes.
Bringing a child who has Down syndrome into your family will be harmful to your other children.Reality – Reality – Again, just not true! In fact it is just the opposite. Your other children actually have a higher chance of becoming more compassionate and accepting of other people. The benefits have been a best kept secret until Dr. Brian Skotko did a study on the affects of having a sibling with Down syndrome. Here is just a sample of what we found.
- 99% of people with Down syndrome said they’re happy with their lives
- 99% of parents said they love their child with Down syndrome
- 97% of brothers/sisters, ages 9-11, said they love their sibling
There is a higher divorce rate for families who have a child with Down syndrome.Reality – While divorce can happen in any family, the studies are actually showing it is currently lower in the families who have a member who happens to have Trisomy 21. Perhaps it has something to do with the many lessons they teach us about life.
This will ruin your life.Reality – It has indeed been a new journey for all of our families, and one that can require many graces at times. (Show me parenting that doesn’t need more at some times!) But ruining our lives… that is simply not happening! An extra chromosome is all it is. The fear of that, is much more paralyzing than the reality. Enjoy your pregnancy! Enjoy your baby!
Words can create barriers and reinforce stereotypes. Therefore, the FCDSN strongly believes in the importance of ensuring that correct language is used when talking or writing about individuals with Down syndrome. A baby born with Down syndrome is not a “Down’s child” or a “baby with Downs.” When describing an individual with Down syndrome, it is preferred that you say, he/she is a baby with Down syndrome. A person with Down syndrome is not a “Downs”. Placing the person before the disability emphasizes the person first and the disability second. When referring to peers, the correct term is “typical” peers as opposed to “normal.” It is also important to use correct terminology. A person does not “suffer” from Down syndrome, nor are they “afflicted”. It is not a disease. Down syndrome is a chromosomal condition which results in an extra copy of the 21st chromosome. While it was discovered by Dr. John Langdon Down, since Dr. Down did not have this syndrome himself, the possessive form is not used. In addition, the ‘s’ in syndrome is not capitalized. Person First language emphasizes respect for the individual. A child is much more than a label. You can help to educate family, friends and physicians about the preferred way to refer to your child.