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National Center For Rare And Genetic Diseases Information Center

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National Center For Rare And Genetic Diseases Information Center

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https://rarediseases.info.nih.gov/diseases/7341/trisomy-13

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Where Can You Call If You Need Help From A Professional On Advice For Your Child With Trisomy 13?

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Where Can You Call If You Need Help From A Professional On Advice For Your Child With Trisomy 13?

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You can call the Nurse Hotline:

For a voice call, call 1-866-418-1002

For speech or hearing impaired, call: 1-866-418-1006

You can also call the Genetic and Rare Diseases Information Canter at: 1-888-205-2311

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Currently, there is no known treatment or prevention for Trisomy 13. When the child is born, surgeons are able to fix things such as a child born with a cleft lip, cleft palate, and or heart problems, depending on how severe they are. However, surgery is usually avoided in months immediately following the birth of the child.

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Trisomy 13 only occurs in about 1 in 16,000 fetuses, but when it happens, it can be detected by prenatal screening tests, like an ultrasound or a alphafetoprotein test. The only tests that can tell a mother for sure their child has Trisomy 13, is an amniocentesis or chorionic villus sampling (CVS). A amniocentesis is preformed by removing a small amount of amniotic fluid from the sac incasing the child, and a CVS is preformed by taking a small amount of cells (also known as chorionic villi) from the placenta, where it is attached to the wall of the uterus.

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What Is The Life Expectancy For A Child With Trisomy 13?

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What Is The Life Expectancy For A Child With Trisomy 13?

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Many of the children who are born with Trisomy 13 usually don't live past their first days or weeks of life. 10% of infants born with Trisomy 13 live past their first year of life. The oldest known people with Trisomy 13 are a girl, aged 19, and a boy, aged 11.

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Advice For Coping If Your Child Gets Diagnosed With Trisomy 13

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Advice For Coping If Your Child Gets Diagnosed With Trisomy 13

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The two most important questions that you must ask yourself when your child is diagnosed with Trisomy 13 are: How good will the quality of life for my child be, and how good will the quality of life for my family be, having to meet the strenuous needs of a child with this diagnosis.  After asking yourself this question, you must make a decision to either keep the child, or terminate the pregnancy. Parents also need to be aware that the Trisomy occurring in their child had absolutely nothing to do with them. This is a completely random occurrence. Another thing that parents expecting a child with Trisomy 13 must know is that children that are diagnosed with Trisomy 13 during the second and third trimesters will most likely be stillborn. There is although, a small chance that a child diagnosed with Trisomy 13 will make it past their first birthday. Ultimately, a parent that has received the news of their child having Trisomy 13 is a devastating experience, and they must know that there are plenty of resources available to them, all about Trisomy 13.

More information towards this subject at: http://trisomy.org/?page_id=285

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What Occurs When A Child Is Born With Trisomy 13?

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What Occurs When A Child Is Born With Trisomy 13?

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When a infant is born with Trisomy 13, the child will be affected with many disabilities. These children are usually candidates for heart defects, spinal cord and brain abnormalities, small or undeveloped eyes (also known as microphthalmia), an abnormal amount of toes or fingers, a cleft palate or lip, and weak muscle tone (also known as hypotonia).

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Website For Parents Expecting A Child With Trisomy 13

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Website For Parents Expecting A Child With Trisomy 13

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Trisomy 18, Trisomy 13 and Related Disorders

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Support Organization for Trisomy 18, 13 and Related Disorders
SOFT is an I.R.S. 501(c)(3) non-profit, volunteer organization incorporated in 1980. SOFT has helped families having children with trisomies for over three decades and is recognized as a primary source of information about trisomy 18, 13 and related disorders.

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SOFT is a primary source of family support and medical information for children having a trisomy condition. Read about SOFT's annual family & medical conference!

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Support Organization for Trisomy 18, 13 and Related Disorders SOFT is an I.R.S. 501(c)(3) non-profit, volunteer organization incorporated in 1980. SOFT has helped families having children with trisomies for over three decades and is recognized as a primary source of information about trisomy 18, 13 and related disorders. . .

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Kathleen Rose, a seven year old girl was born with Trisomy 13, and is defying the odds.

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Kathleen Rose: Trisomy 13: How Our Beautiful Girl Surprised us all!

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This condition occurs when there are three copies of chromosome 13, rather than the amount a normal infant is supposed to have, which is two. Trisomy 13 can also happen in infants when chromosome 13 becomes attached to another chromosome during the formation of reproductive cells, or very early in the development of the fetus. A woman of any age can give birth to a child with Trisomy 13, but this defect tends to occur when older women give birth.

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Trisomy 13, also known as Patau Syndrome, is a chromosomal condition connected with physical abnormalities, and intellectual disability.