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".
- Trisomy 18 (T18) is also known as Edwards Syndrome.
- The incidence of trisomy 18 is approximately 1 in 5000 live births. This does not include babies who were miscarried early or born still.
- 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.
- Having a child with trisomy 18 occurs more often in older mothers but can also happen to younger mothers.
- 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.
- 90% of babies with trisomy 18 have a heart defect. There are babies and kids with T18 are successfully undergoing heart surgery.
- Girls with T18 are more likely to survive than boys with T18, but there are some strong survivors out there -- both boys and girls!
- Some babies and children with T18 can eat by mouth but most require a feeding tube.
- Every child with T18 is unique as T18 can affect the body in many different ways.
- Babies and children with trisomy 18 have beautiful smiles!
- The oldest living person with full trisomy 18 is currently 38 years old! Those with Mosaic T18 can live even longer.
- Babies and children with T18 experience significant physical and cognitive disabilities but can learn new skills and interact with others.
- Approximately 10% of babies born with T18 will reach their first birthday.
- Approximately 500 people, older than age 1, are living with Full Trisomy 18 & Trisomy 13 in the US.
- All babies and children with T18 are special, and 99% of families with a child living with trisomy 18 describe them as happy!
- Parenting a child with T18 is challenging in many ways, but it is also full of unique blessings.
- Babies and children with T18 are adored by their siblings.
- 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.