Wednesday, April 11, 2012

knowledge for Trisomy 18

http://onlinenew24.blogspot.com/


Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a chromosomal defect. It occurs in about 1 out of every 3000 live births. The numbers increase significantly when early pregnancy losses are factored in that occur in the 2nd and 3rd trimesters of pregnancy.

Children with Trisomy 18, also known as Edwards syndrome, have an extra copy of chromosome 18, which causes symptoms like clenched hands, low birth weight, mental deficiency, small head and jaw and an unusual-shaped chest, according to the National Institutes of Health.

“Most children with Trisomy 18 die in the first three months of life, and only 10 to 20 percent survive past the first year,” said Dr. Robert Marion, Chief of Genetics and Developmental Medicine at Children’s Hospital at Montefiore and Albert Einstein College of Medicine.
Tests can be done during pregnancy to determine if the child has Trisomy 18. Half of infants with this condition do not survive beyond the first week of life, and the few children who survive to the teenage years have serious medical and developmental problems, according to the National Institutes of Health.
“Those who survive are almost always girls,” said Marion. “The reason for this is that the condition is more lethal in boys, who die intrauterinely.”
Dr. Ronald Crystal, chair of genetic medicine at Weill Medical College of Cornell University in New York City, said the disease is “invariably fatal,” with survival depending on the severity of symptoms and the quality of care. Bella Santorum, 3, is “already an exception,” he said.

What can you do:

There are several things you can do to support your friends. First, learn as much as you can about Trisomy 18. See What is Trisomy 18 to understand what your friend is facing. The effort you make to learn will speak volumes to your friend.
Reading stories and seeing pictures of other families in their Legacy Pages, as well as in our Family Profiles section may help you understand better what your friends may be dealing with, and may give you good ideas of how to help your friends.
Another thing you can do is learn more about grief. A good way to do this is to read some of the information in the Remembering a Child section of this site. Read The Journey, which describes what grief is like. Another good resource is How to Help a Friend Who is Grieving, written by a mom who lost her daughter to Trisomy 18.
We also have an online community where you can interact with other families and ask them questions directly about their experiences. There is also a section especially for family and friends. See the Online Support Community home page for more information about this community and how you can join it. Of particular interest will be the Friends and Family board.