18 Things to Know About Trisomy 18 - 2019 Update

March 18 is Trisomy 18 Awareness Day. In recognition of this day, I want share a list I compiled of "18 Things to Know about Trisomy 18".

1. Trisomy 18 (T18) is also known as Edwards Syndrome.
2. The incidence of trisomy 18 is approximately 1 in 5000 live births. This does not include babies who were miscarried early or born still.
3. There are three types of trisomy 18: full, mosaic, and partial. In full T18, every cell contains a third copy of chromosome 18. In mosaic T18, only some of the cells contain an extra 18th chromosome. In partial T18, only a part of an extra chromosome 18 is present instead of the entire chromosome.
4. Having a child with trisomy 18 occurs more often in older mothers but can also happen to younger mothers.
5. Trisomy 18 can be diagnosed in utero by chorionic villus sampling (CVS) and amniocentesis. Non-invasive prenatal testing (NIPT) is available to screen for trisomy 18 in the first trimester of pregnancy. These tests should be confirmed by CVS or amniocentesis if a positive result is received.
6. 90% of babies with trisomy 18 have a heart defect. There are babies and kids with T18 are successfully undergoing heart surgery.
7. Girls with T18 are more likely to survive than boys with T18, but there are some strong survivors out there -- both boys and girls!
8. Some babies and children with T18 can eat by mouth but most require a feeding tube.
9. Every child with T18 is unique as T18 can affect the body in many different ways.
10. Babies and children with trisomy 18 have beautiful smiles!
11. The oldest living person with full trisomy 18 is currently 38 years old! Those with Mosaic T18 can live even longer.
12. Babies and children with T18 experience significant physical and cognitive disabilities but can learn new skills and interact with others.
13. Approximately 10% of babies born with T18 will reach their first birthday.
14. Approximately 500 people, older than age 1, are living with Full Trisomy 18 & Trisomy 13 in the US.
15. All babies and children with T18 are special, and 99% of families with a child living with trisomy 18 describe them as happy!
16. Parenting a child with T18 is challenging in many ways, but it is also full of unique blessings.
17. Babies and children with T18 are adored by their siblings.
18. Life is a precious gift, including life with T18.

For more information on a diagnosis of T18 or living with T18, please visit www.trisomy.org.